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Thanks for visiting our guestbook!(This is an open guestbook. Please feel free to add an entry to the guestbook for others to read.)IF YOU DON'T SEE YOUR ENTRY AFTER ADDING -- PLEASE CLICK ON RELOAD/REFRESH Click here to sign the guestbook. Click here to go back to the main page. I was looking at the pictures of Tatiana and she is beautiful, I didn't think any child could be as beautiful as Natasha. We don't know Tatiana but did know Natasha and we all loved her, she was a sweetheart. Barb Hallock <bhallock@hotmail.com> Bridgeton, NJ usa - Friday, January 1, 2010 8:14 AM CST hi I`m Esooo can Ibe yor friend E$oOo <soso-kiss-2009@hotmail.com > jeddah, ksa - Thursday, March 12, 2009 1:39 AM CDT Ok Sweetie, Really!! An update is needed. I will email you too, but remember.... We MPS families always check for updates. You are a year overdue! Time for an update. :):):) Love and hugs, Tami Tami Slawson <tlslawson@aol.com> la verne, - Monday, June 30, 2008 9:23 PM CDT Thinking of you all!! Jody <rufusandjodi@yahoo.com> ELKHART, KS - Friday, June 20, 2008 2:59 PM CDT Thanks for that up-date Letty I have been so worried!!!! I Pray all things are good!!! Jody <rufusandjodi@yahoo.com> Elkhart, Ks USA - Friday, May 30, 2008 11:52 PM CDT YEAH I AGREE !!! I just reminded you yesterday so, I hope you do update. For those us checking in, Tatiania and the family are well. I just seen them over the weekend. Letty <lettynazario@yahoo.com> Riverside, CA Riverside - Monday, April 28, 2008 6:21 PM CDT Now wait! Need an update! I have been bad lately but come on you really need to update! Love and Hugs, Tami Slawson (www.caringbridge/ca/slawson ) <tlslawson@aol.com> - Friday, April 25, 2008 9:12 PM CDT Happy Holidays From The Wiggins Family Jody <rufusandjodi@yahoo.com> - Friday, December 21, 2007 2:38 PM CST Ok I need a real update on your page! Please know you are in my thoughts and prayers this holiday season and every day. May you be blessed in the New Year! Love and Hugs, Tami Slawson www.caringbridge.com/ca/slawson Tami <tlslawson@aol.com> - Wednesday, December 19, 2007 4:11 PM CST I found the page hope to see you for x-mas tia or if not for new year. we miss all of you guy's come down soon for we could see the nene send me some pictures of you and the family, and I'll send you some back when I get your e-mail celina perez <jjce3perez@yahoo.com> Riverside, ca Riverside - Wednesday, November 28, 2007 7:13 PM CST hey tia it's me patty, I miss Natasha too patty santos <konstantin2@att.net> Riverside, ca usa - Wednesday, November 28, 2007 7:07 PM CST Hi Maria It has been a long time since we have had an up-date. This worries me so I hope and Pray everything is ok. Love you all Jody <rufusandjodi@yahoo.com> - Sunday, September 16, 2007 5:54 PM CDT Hola Maria. Soy Sole, de Jetblue. Espero que todo este bien. Los tengo presentes en mis oraciones. Besos. Soledad Marchitelli <m_solita@yahoo.com> WVC, UT USA - Saturday, September 8, 2007 1:00 AM CDT No up-dates I am getting worried!!! Hope all is well. Praying and thinking of you all!!! Jody <rufusandjodi@yahoo.com> - Friday, September 7, 2007 11:05 PM CDT Just stopping in for another update. Hope all is going well. I know you are extremely busy with the new one and all. It will be good to see you again. Our prayers continue with you. Marsha <marsha.boatright@jetblue.com> West Jordan, UT USA - Wednesday, August 29, 2007 6:59 PM CDT I hope all is good. Love and Friends Up-date us when you can...I know you will! Jody <rufusandjodi@yahoo.com> - Monday, August 6, 2007 2:02 PM CDT There will always be sunshine after the rain!! Hang in there! Jenny Medine <smedine8@msn.com> Layton, UT USA - Friday, July 27, 2007 4:45 AM CDT Checking in on your family. Hope all is well!! Jody <rufusandjodi@yahoo.com> - Friday, July 20, 2007 11:52 AM CDT My prayers are with you guys!! I love Maria and I admired her to be so strong and a loving person. I know that God do miracles every day and I'm positive that Tatiana will be one of them. Many blessings for all your family. Vilma Montes <Vilma.Montes@jetblue.com> West Jordan, Utah USA - Wednesday, July 4, 2007 4:34 PM CDT Maria, Tatiana, and family~ Wish you all well during Tatiana's recovery. Carrie Fisher Sandy, UT - Wednesday, July 4, 2007 2:14 PM CDT Maria, you are in our prayer's. Come home soon, safe and sound. Sophia Davis <sophia.davis@jetblue.com> Holladay , ut 84121 - Saturday, June 30, 2007 10:01 AM CDT Hey Sweetie, I'm praying very hard!!! I wish I could leave the house for a day. I would drive up and visit, giving you hugs in person!! Please keep updating when you can and Know we are storming the heavens for you all. Love and Hugs, Tami Slawson ( www.caringbridge.com/ca/slawson ) <tlslawson@aol.com> La Verne, CA - Sunday, June 24, 2007 4:39 PM CDT Glad to hear Tatiana's first surgery went well. I pray she recovers quickly and she will be in my prayers for the next round! Lisa Post <Ltjpost@yahoo.com> Shelton, CT - Thursday, June 21, 2007 12:11 AM CDT Thanks for the up-date and I hope your little one continues to do well. Sounds like the wait was long for you all. I will keep her in my Prayers. Jody Wiggins <rufusandjodi@yahoo.com> - Wednesday, June 20, 2007 8:38 AM CDT Tatiana will be in my thoughts and prayers as she undergoes her upcoming procedures. Post an update when you can. Lisa Post <ltjpost@yahoo.com> Shelton, CT - Thursday, June 7, 2007 8:33 PM CDT Maria just wanted you to know I stopped by for a up-date. I know you will as soon as you know something. Love you guys!! Jody <rufusandjodi@yahoo.com> - Wednesday, June 6, 2007 8:26 AM CDT My Prayers and thoughts are with you and your family! May you be filled with peace and Joy! Dixie Hopkins <dixie.hopkins@jetblue.com> Sandy, Utah USA - Wednesday, June 6, 2007 8:24 AM CDT Praying for you and your little one Maria. Just remember I am always here for you and I will be keeping in touch. We love you guys so much. The Wiggins Family Jody <rufusandjodi@yahoo.com> - Sunday, May 20, 2007 9:24 PM CDT I'm amazed at the battles you have fought and how far you have come! Ros Hadden <scarhandpiper@gmail.com> SLC, UT - Friday, May 18, 2007 6:29 AM CDT Maria and Nanie everything will be alright, you are both strong fighters. I will pray for you both. Miss and love you much. Letty <lettynazario@yahoo.com> Riverside, CA - Wednesday, May 16, 2007 11:13 AM CDT you are in my thoughts and prayers. Good luck with all of your upcoming events. kate larson <kate.larson@jetblue.com> RIVERTON, ut USA - Wednesday, May 16, 2007 9:34 AM CDT  Happy MPS Awareness Day! jennifer Restemayer <jennmarie@bis.midco.net> Bismarck, ND USA - Tuesday, May 15, 2007 3:03 PM CDT Your little girl is so beautiful and looks so happy- She and your family will be in my prayers. Monica Richard Sandy, UT US - Tuesday, May 15, 2007 2:31 PM CDT Brian and Amy love you!! Amy Williams Hollywood, CA USA - Tuesday, May 15, 2007 1:44 PM CDT Hi Tuckett Family, Miss Tosha sent me over...Tatiana you are such a cutie not to mention a FIGHTER...the strangest thing is your birthday is on my anniversary when my husband and i started dating...the other is your procedure on June 19th is on our 10 year Wedding Anniversary...so with that you will persevere through this bump in the road cause that day is a great one:) i will be sayin lots of prayers for you and sending ya love and big hugs... mumzy heidi www.caringbridge.org/visit/zoiebudd heidi budd <numberonemumzy@hotmail.com> Alliance, NE - Tuesday, May 15, 2007 12:57 AM CDT i was sent an email on your behalf... i wanted to stop by... sending you lots of love craig, lauren, and helen CRAIG helen <trula1@comcast.net> - Tuesday, May 15, 2007 11:42 AM CDT Nuestras oraciones y mejores deseos estan contigo y tu familia, cuidate mucho tienes otra linda creatura contigo. Alex & Yanira <alejandro.hernandez@jetblue.com> Sandy, UT USA - Tuesday, May 15, 2007 10:07 AM CDT You are in my prayers. I am praying for God's guidance for the Dr's . Peace and comfort in your hearts. And complete healing for your darling daughter. Michelle Bodell (crew support) Michelle Bodell <michelle.bodell@jetblue.com> WEST JORDON, Ut USA - Tuesday, May 15, 2007 8:08 AM CDT You are a wonderful, strong woman. You have had trials before and I know that they will help you to have the faith and courage during this one. All will be well. Take care and know I will be thinking and praying for your family! Dawn - Tuesday, May 15, 2007 0:38 AM CDT Hey sweetie. Wishing you and your family the best. My prayers are with you all. Everything will turn out great. evelyn wvc, ut USA - Tuesday, May 15, 2007 0:26 AM CDT Wow,a new baby,I had no idea,lollol!Congratulations!! I'm sorry to hear about the moyamoya.It's always something!Hopefully you all can get it under control.Don't worry our babies are fighters and everything will be fine. Love, Tosha and Sydney TOSHA VANHOOK <HURLERMOM101@HOTMAIL.COM> - Friday, March 30, 2007 8:09 AM CDT Happy Belated Birthday Tatiana! Hoping all the testing goes well~Keep us posted. Maria, I hope everything is going well for you! Love, Tosha and Sydney Tosha VanHook <hurlermom101@Hotmail.com> - Tuesday, February 27, 2007 4:51 PM CST Hoping the tests show something that is easily treated! Tatiana is in our prayers! Love, Jennifer & Allison jennifer Restemayer <jennmarie@bis.midco.net> Bisamrck, ND USA - Sunday, February 25, 2007 1:58 PM CST WISHING YOU ALL NOTHING BUT THE BEST IN 2007! LOVE, TOSHA AND SYDNEY VANHOOK TOSHA VANHOOK <HURLERMOM101@hOTMAIL.COM> - Saturday, December 30, 2006 9:31 PM CST Just wanting to wish you a very happy 2007!! Call or email when you hear from the docts!! Love and Hugs, Tami ( www.caringbridge.com/ca/slawson ) Tami <tlslawson@aol.com> - Wednesday, December 27, 2006 4:55 PM CST Happy Christmas & Happy New Year Love Tina,Padraic,Amy+Sophie Tina <tina@melroseroad.co.uk> London, UK - Sunday, December 24, 2006 5:53 AM CST Hello to all!! I Miss you all so much. I Pray you and your Family Have A Merry Christmas and A Healthy Holiday Season!!! The Wiggins Family Jody <rufusandjodi@yahoo.com> - Sunday, December 17, 2006 7:37 PM CST Hi Tatiana, My name is Jenna and I came across your website. You are a cutie and a fighter. You are in my thoughts and prayers. www.caringbridge.org/canada/jenna Jenna <hockeykid@telus.net> Kamloops, BC Canada - Thursday, September 28, 2006 0:30 AM CDT what a beautiful girl... just wanted to stop by... sending you lots of love craig, lauren, and helen CRAIG helen <trula1@comcast.net> - Thursday, September 21, 2006 12:54 AM CDT Tatiana is getting so BIG! She is beautiful! I am happy to hear that she is doing well! I pray that your Dad continues to recover from the Strokes! Love, Jennifer & Allison Jennifer Restemayer <jennmarie@bis.midco.net> Bismarck, ND USA - Thursday, September 21, 2006 10:07 AM CDT Maria, Wow how she has grown into a beautiful child. Grayden is so big now what a cutie he is. You looked very Happy and Pretty in your picture. It is so sad to hear about your dad...I will Pray for him to get better. We are doing good Marissa is growing into a beautiful girl. We so miss our Sweet Alexis. I Pray her and Natasha are Buddies in Heaven. Love you and Miss you my Dear sweet Friend...Jody Jody Wiggins <rufusandjodi@yahoo.com> - Tuesday, August 29, 2006 7:31 PM CDT HI GIRLS, I'M SORRY TO HEAR ABOUT YOUR DAD! I'M SO GLAD TO HEAR THAT TATIANA IS DOING WELL! LOVE, TOSHA AND SYDNEY VANHOOK TOSHA VANHOOK <HURLERMOM101@hotmail.com> BLOOMINGTON, ILL - Friday, August 25, 2006 12:03 AM CDT Hi Maria - Thanks for sharing your daughter's website. Your daughter is a cutie! Hang in there! I'm sure I will be talking to you soon! Jill Smith <jill.smith@jetblue.com> West Jordan, UT USA - Tuesday, August 22, 2006 10:11 AM CDT Hey Sweetie, I'm so sorry to hear about your father! Praying for you and Letty! Also so sad for an angel birthday for Natasha. I don't know how you do it with such grace and love. Big Big HUGS! OK, you need to get your butt down to the run! I have to meet you in person!! Come on!! You guys would have fun! Please! LOLOLOL Love and Big Hugs, Tami <TLSlawson@aol.com> - Friday, August 18, 2006 5:18 PM CDT Hi, just checking in on you. I am glad to know Nanie is doing well. Hope that she continues to do good. Love and miss you all. God bless Letty <lettynazario@yahoo.com> Riverside, ca - Wednesday, July 26, 2006 2:34 PM CDT Hi, just checking in on you. I am glad to know Nanie is doing well. Hope that she continues to do good. Love and miss you all. God bless Letty <lettynazario@yahoo.com> Riverside, ca - Wednesday, July 26, 2006 2:33 PM CDT I am not sure why I never knew about your webpage before now but I just caught up and will come back soon. Your daughter is such a cutie! Many prayers still for things to improve and get better! Erica Thiel www.caringbridge.org/wi/ericathiel <scheiecat@yahoo.com> Beaver Dam, WI, - Wednesday, July 19, 2006 11:23 PM CDT Hey Sweetie, When did our girl grow up??? Holy Buckets she looks great!! OK, YOU KNOW WHAT YOU HAVE TO DO!!! Come to the Walk/Run! PLEASE!!!! You can visit family and meet and have fun with our MPS family! YOU MUST!!!!!!!!! Love and Hugs, Tami <TLSlawson@ aol.com > - Tuesday, July 11, 2006 3:02 PM CDT HAPPY 4th OF JULY!! Jenn Deskins - Tuesday, July 4, 2006 6:58 PM CDT Hello Tatiana, you are a very beautiful little girl. Hope all is going well with you. My son Rhys has Hurlers too and is 4 years post BMT. We'll be back to check on you soon, take care, Trish & Rhys boyd, www.caringbridge.org/visit/rhysboyd Trish Boyd <boyd.trish@gmail.com> Kendal, On Canada - Thursday, June 29, 2006 9:18 AM CDT HI! I just wanted to stop in and let you guys know I'm thinking of you! I love all the new pictures!!! Tatiana is such a doll baby!!! Hope you are having a wonderful weekend! www.caringbridge.org/ky/tylerdeskins Jennifer Deskins <tylersmommy11304@yahoo.com> - Sunday, June 18, 2006 2:57 AM CDT Hi Maria! Stopping by to say hello and check out the new pics. How sweet! Have a great summer and hope Tatiana continues to do well! Lisa Post <ltjpost@yahoo.com (new email)> - Saturday, June 17, 2006 12:10 AM CDT THE NEW PICTURES ARE CUTE!! TATIANA LOOKS GREAT!!!!! KEEP UP THE GOOD WORK GIRLS!!! LOVE TOSHA AND SYDNEY. TOSHA VANHOOK <HURLERMOM101@HOTMAIL.COM> - Wednesday, June 14, 2006 9:31 AM CDT Hey Sweetie, Are you coming to the LA area??? If so let me know and I would love to see ya and have lunch or something!! Call or email me!! Love and Hugs, Tami <TLSlawson@aol.com> - Tuesday, June 6, 2006 11:52 AM CDT Hey guys! We haven't talked to you in a while so I thought that I would drop by and say hi! Hope everything is going well with you all! We miss you and think of you all often! Troy & Cami Hilton Cami Hilton <troycami@msn.com> Sandy, UT USA - Thursday, June 1, 2006 9:28 PM CDT Just stopping by to wish you all wonderfully Holiday weekend also!  Hugs and prayers, Patty and Jesse MPS IIIA Lysosomal Storage Diseases Support Forum Patty Taormino <wordinedge@aol.com> Balto, MD USA - Monday, May 29, 2006 3:19 PM CDT  Hugs, Kim & Scotty (MPS II) <cottons@earthlink.net> Modesto, CA - Thursday, May 25, 2006 2:21 AM CDT HAPPY MOTHER'S DAY!!! Hope you have a great day!! Jenn Deskins - Sunday, May 14, 2006 2:02 PM CDT  Hugs, Kim & Scotty (MPS II)  <cottons@earthlink.net>Modesto, CA - Sunday, May 14, 2006 1:01 AM CDT Happy Mother's Day! Love, Jennifer & Allison Jennifer Restemayer <jennmarie@bis.midco.net> Bismarck, ND USA - Saturday, May 13, 2006 10:01 PM CDT  Hugs and prayers, Patty and Jesse MPS IIIA Lysosomal Storage Diseases Support Forum Patty Taormino <wordinedge@aol.com> Balto, MD USA - Saturday, May 13, 2006 11:33 AM CDT HAPPY MOTHER'S DAY!!! LOVE TOSHA AND SYDNEY. WWW.CARINGBRIDGE.ORG/VISIT/SYDNEYVANHOOK TOSHA VANHOOK <HURLERMOM101@HOTMAIL.COM> - Thursday, May 11, 2006 5:24 PM CDT Just wanted to stop in and say HI!! and let you guys know I'm thinking of you!!! Hope you have a wonderful week!! www.caringbridge.org/ky/tylerdeskins Jenn Deskins <tylersmommy11304@yahoo.com> - Tuesday, May 2, 2006 3:04 PM CDT HAPPY EASTER! LOVE TOSHA SYDNEY AND FAMILY. TOSHA VANHOOK <HURLERMOM101@HOTMAIL.COM> - Saturday, April 15, 2006 1:30 PM CDT  Kim & Scotty (MPS II) www.caringbridge.org/ca/friends <cottons@earthlink.net> - Wednesday, April 12, 2006 1:05 AM CDT Thank you so much for emailing me! Your daughter is beautiful! I will continue to check back in for updates!! and keep her in my prayers! www.caringbridge.org/ky/tylerdeskins Jennifer Deskins <tylersmommy11304@yahoo.com> - Wednesday, March 22, 2006 3:48 AM CST  PRAYER BEARS WEBSITE Alicia, John, Ciara, Hunter & ^^Angel^^ Tommy - BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com> - Tuesday, March 14, 2006 5:31 PM CST Hey Sweetheart! I have been thinking about you so much lately! Has our girl started on ERT again yet? I hope so! Well, I just wanted you to know I'm thinking about you and checking even if I don't sign as much as I should! :( Love and Hugs, Tami (www.caringbridge.com/ca/slawson <TLSlawson@aol.com> La Verne, CA - Monday, March 6, 2006 2:40 PM CST Hi Maria! Sorry it's been so long since I've signed in. Tatiana is such a cutie pie! I hope you can get some answers about her neurological symptoms. Please let us know how her tests come out. She's in my prayers! Lisa Post <LMPOST@cox.net> - Tuesday, February 28, 2006 7:24 PM CST Just checking in on Tatiana. She is a beautiful young lady! I pray she continues to do well for you! What a blessing she is!! Hugs and Prayers, Patty and Jesse Ride to Wipe Out MPS Patty and Jesse - MPS IIIA <wordinedge@aol.com> Balto, MD USA - Sunday, February 26, 2006 7:20 AM CST Hey Sweetie, I check the site but have been really bad about signing. Has our girl started ERT yet? Loving the new pictures and thinking about you guys everyday! Love and Hugs, Tami ( www.caringbridge.com/ca/slawson) <TLSlawson@aol.com> - Thursday, February 23, 2006 6:03 PM CST Sending prayers for sweet Tatiana . Michele Gist W-S, NC - Sunday, February 19, 2006 7:52 AM CST  Love, Kim & Scotty  <cottons@earthlink.net>Modesto, ca - Tuesday, February 14, 2006 7:18 PM CST HAPPY VALENTINE'S DAY!LOVE TOSHA AND SYDNEY! LATOSHA VANHOOK <SFROBERTS@HOTMAIL.COM> - Tuesday, February 14, 2006 8:21 AM CST  Alicia, John, Ciara, Hunter & ^^Angel^^ Tommy BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com> - Sunday, February 12, 2006 9:00 PM CST HI EVERYONE!I'VE NEVER SEEN YOUR WEB PAGE BEFORE BECAUSE I DID'NT KNOW THE SITE NAME.I'M GLAD EVERYTHING IS GOING WELL.TATIANA LOOKS SO GOOD!!SHE'S SO CUTE.I HOPE WE STAY IN TOUCH AS WE GET CLOSER AND CLOSER TO TRANSPLANT.XOXO 4 U.LOVE TOSHA AND SYDNEY. WWW.CARINGBRIDGE.ORG/VISIT/SYDNEYVANHOOK LATOSHA VANHOOK <SFROBERTS@HOTMAIL.COM> BLOOMINGTON, ILL - Thursday, February 2, 2006 8:12 AM CST  Love, Patty and Jesse Patty and Jesse <wordinedge@aol.com> Balto, MD USA - Sunday, January 1, 2006 11:59 AM CST Our best wishes for a healthy and Happy Holiday Season! May 2006 bring you continued healing, much love and much peace. Claudina <claubonetti@aol.com> New York, NY - Monday, December 26, 2005 10:37 PM CST Merry Christmas and Happy New Year. Love Tina,Padraic,Amy+Sophie Tina <tina@melroseroad.co.uk> London, UK - Saturday, December 24, 2005 3:29 PM CST HI,THIS OUR FIRST VISIT.WE WANTED TO SAY HI AND HOPE THAT YOUR DOING WELL.LOVE TOSHA AND SYDNEY. CARINGBRIDGE.COM/SYDNEYVANHOOK LATOSHA VANHOOK <SFROBERTS@HOTMAIL.COM> BLOOMINGTON, ILL USA - Monday, November 28, 2005 4:00 PM CST Hi Maria, I'm so glad that your little one is doing so well, and she is beautiful! I think you remember us from MN. Jason has his cord blood transplant in 2001. Jason is going pretty good, but he is going to have hip and knee surgery in about 2 weeks. Jay and I are trying to get Jason ready for it, but how do get a child ready for something this big,I don't think he understands what's going to happen. You and you're family are always in our thoughts and prayers. Take Care, Amanda Green www.caringbridge.org/fl/jasongreenjr Amanda Green <iluv63099@aol.com> Jacksonville , FL USA - Tuesday, September 27, 2005 1:53 PM CDT Hey Maria, Tatiana is beautiful. Thanks for sharing this with me. I can see you are a strong person and a great mother. Definitely someone I look up to. Tu Amiga...Shirley Shirley Duran <shirley.duran@comcast.net> Salt Lake City, UT USA - Thursday, August 25, 2005 9:46 PM CDT Thinking of you... Have faith that her donor cells will continue on their rise. Tatiana is a special soul and many are watching over her. Thank you for always sharing your journey. With love, Claudina <claubonetti@aol.com> New York, NY - Monday, August 8, 2005 8:53 PM CDT Hi maria, thank God Nani is still doing well and remember that just because her health is somewhat out of you hands doesn't mean you can't continue to have faith. I know I always tell you over and over again, but don't you ever give up faith in God. I am so proud of what you have done with Nani and Natasha, they couldn't have had a better MOM. Keep your head up and be proud that you have done the best you can. Give the kids a big hug and kiss from all us here at California and remember we love you. Letty <lettynazario@yahoo.com> Riverside, CA - Monday, August 1, 2005 1:29 PM CDT  Alicia, John, Ciara, Hunter, & ^^Angel^^ Tommy BENNETT CHILDREN'S JOURNAL <mps3mom@hotmail.com> - Saturday, July 30, 2005 1:43 PM CDT Dear Maria, Thank you for your thoughtful posts on our website! It is so wonderful to hear from you and see the great pictures of Tatiana - out there looking and feeling so good! We always think of you and are grateful to have those who have treaded similar waters giving us support. Que Dios los siga bendiciendo con mucha salud, paz y amor- Un abrazo, Claudina <claubonetti@aol.com> New York, NY - Thursday, July 21, 2005 2:13 PM CDT Just checking in on you and hope you are doing well. Take care & lots of hugs & kisses. Letty <lettynazario@yahoo.com> Riverside, CA - Wednesday, July 13, 2005 8:55 AM CDT Hi Maria! Thanks for thinking of me! I sent you an email. Tatiana will be in my prayers about this seizure business. She is so adorable! God Bless and Happy 4th! Lisa Post <LMPOST@cox.net (new email address)> - Friday, July 1, 2005 3:18 PM CDT Happy 4th of JULY. Happy Thoughts heading your way! Janelle (Alli's Nana) Janelle Kunellis <janellekunellis@yahoo.com> - Thursday, June 30, 2005 8:46 PM CDT Nice to know that Tatiana is doing well now that you are back home. I enjoyed having you all here and having the time to be with Nani. I am missing you already. Hopefully I get the nerve to fly over or at least drive. I hope Nani continues to do well and not scare mommy no more. Sis keep up your faith it's all we have. love you all. Letty <lettynazario@yahoo.com> Riverside, CA - Wednesday, June 29, 2005 7:59 PM CDT Maria~ I hope and pray that Sweet Tatiana is alright. Sometimes, if Allison overdoes it, she complains of her hips or her back hurting. I know she has hip dyspasia, and we need to monitor that closely. I think this is what causes her discomfort. Motrin helps her a lot when she is sore. It is an antiinflamatory as well as a pain reliever. I know what you mean about dreading the Dr's appointments! I feel the same way sometimes....It is just too much to hear bad news everytime you take her in! Emotionally, I am drained after Alli's annual appointments. Hang in there! We are her for you and we understand! Love, Jennifer& Allison Jennifer Restemayer <jennmarie@bis.midco.net> Bismarck, ND USA - Tuesday, June 21, 2005 9:53 AM CDT Have a great start to the week ahead. Hugs, Janelle (Alli's Nana) Janelle Kunellis <janellekunellis@yahoo.com> - Monday, June 13, 2005 9:18 AM CDT Just a note to let you know we were thinking of you. Our prayers are with you always. Un abrazo a todos... con mucho carino, Claudina (Caterina's mom) <claubonetti@aol.com> Durham, NC - Thursday, May 26, 2005 10:59 PM CDT http://www.mpsrun.com/images/AlliHigh.wmv My Granddaughter's video on two years of her infusions. Smiles, Janelle Janelle Kunellis <janellekunellis@yahoo.com> - Tuesday, May 17, 2005 8:21 PM CDT Happy Mother's Day! Janelle (Alli's Nana) Janelle Kunellis <janellekunellis@yahoo.com> - Saturday, May 7, 2005 9:05 PM CDT Sounds like a busy girl with all that playing! GREAT!! Janelle (Alli's Nana) Janelle Kunellis <janellekunellis@yahoo.com> - Wednesday, May 4, 2005 3:55 AM CDT Hi Maria, HAPPY BIRTHDAY!!! Just cheking up on Nani. Although, I speak to you almost daily. Hope Nani has a heathly week so you can go celabrate your Birthday. Continue to keep us posted on how she is doing. God Bless Letty <lnazario@lhteamcorp.net> Riverside, CA Riverside - Tuesday, May 3, 2005 9:18 PM CDT Just checking in.. hugs, Janelle (Alli's Nana) Janelle Kunellis <janellekunellis@yahoo.com> - Tuesday, April 26, 2005 7:53 PM CDT Hey Maria, It's your sis Veronica, Tatiana looks so beautiful Send me one of those pictures. We are praying for you all. I Love You. I'll call you soon Vee Veronica Howard Sydney, NSW Australia - Sunday, April 24, 2005 5:07 AM CDT Sending happy thoughts your way today! Janelle (Alli's Nana) Janelle Kunellis <janellekunellis@yahoo.com> - Thursday, March 31, 2005 7:50 AM CST The Pictures are great! Love the way Nani looks!!! I'm soooo happy to know she still continues to do better. I realy miss all of you and hope that we can come and visit soon if not, we are going to wait till you come in June. XXX000!!! Letty <lettynazario@yahoo.com> Riverside, Ca Riverside - Tuesday, March 29, 2005 11:42 PM CST Blessed Easter to all of you. Janelle (Alli's Nana) Janelle Kunellis <shoe111550@yahoo.com> - Saturday, March 26, 2005 11:23 PM CST Just thinking about you all. Janelle (Alli's Nana) Janelle Kunellis <shoe111550@yahoo.com> - Monday, March 21, 2005 5:02 PM CST HOLY BUCKETTS!!! Tatiana looks so cute in the new pictures!! I need to really talk to you and find out how your doing. I will email. Love and Hugs, Tami <tlslawson@aol.com> - Monday, March 21, 2005 4:11 PM CST Hoping all is going well. When is the birthday party?? Janelle (Alli's Nana) Janelle Kunellis <shoe111550@yahoo.com> - Sunday, March 13, 2005 8:52 PM CST OK, Just being a pest and needing an update! I hope all is well and please know I'm praying for you guys!! Love and Hugs, Tami <tlslawson@aol.com> - Sunday, March 6, 2005 9:12 PM CST HAPPY VALENTINE'S DAY TO ALL!! Love, Janelle (Alli's Nana) Janelle Kunellis <shoe111550@yahoo.com> - Monday, February 14, 2005 6:39 AM CST Hi Maria and family, just checking to see how Nanie is doing. I am happy to know she is a little healthier at least for the time being, hopefully she continues to do well. Lots of huggs and kisses. Letty <lettynazario@yahoo.come> Riverside, CA Riverside - Monday, January 31, 2005 1:05 PM CST Greetings. I am checking in to send my best wishes and support. Janelle (Alli Nana) Janelle Kunellis <shoe111550@yahoo.com> - Sunday, January 30, 2005 2:42 AM CST Hi Maria, I found your site through Daria's page. It looks as though you are doing all the right stuff. We our our childrens best advocate! I will keep you all in prayer. I have an MPS child also, he is MPS III (Sanfilippo A) If ever you want to chat, a great place to come is at the www.mpsforum.com There are lots of nice familes and much good advice and loads of support there! Stop by and check it out some time. Patty and Jesse http://www.caringbridge.org/md/myjesse Patty Taormino <wordinedge@aol.com> Baltimore, MD USA - Saturday, January 29, 2005 5:39 PM CST Hey You, You have been busy, Good for you! Your asking the right questions. If you ever want to talk, call me. 909-223-7132 Love and Hugs, Tami ( www.caringbridge.com/ca/slawson <tlslawson@aol.com> La Verne, CA - Friday, January 28, 2005 7:13 AM CST Hi Maria, Just a note to let you know you are in our prayers. Our daughter, Caterina, also has Hurler's Syndrome and we are here at Duke (she was transplanted 6 months ago). We are happy to hear you had a good time at the conference and I hope your questions are answered soon. Tatiana is a cutie! Hang in there, keep the faith, and know that many keep you in their prayers... Claudina (Caterina's mom) www.caringbridge.org/ny/caterinamarcus <claubonetti@aol.com> Durham, NC - Friday, January 14, 2005 3:18 PM CST Maria~ I just wanted to let you know that 90 some % of the kids on ERT DO develop antibodies. My daughter, Allison did. BUT 6 month later, her antibody level was down by over half. Have you ever contacted Dr. Kakkis? I know he would be able to help you with the decision on whether or not to keep Tatiana on ERT. Tatiana is in our prayers! Love, Jennifer Jennifer Restemayer www.caringbridge.org/nd/allison <jennmarie@bis.midco.net> Bismarck, ND USA - Monday, January 10, 2005 7:55 PM CST Thinking of you and your family today. I have 2 MPS I children. Gabrielle Rivas <gabbi_001@msn.com> South El Monte, ca USA - Sunday, January 9, 2005 9:56 PM CST Wishing you a Merry Christmas and Happy New Year!!!! Love and Hugs, Tami Slawson ( www.caringbridge.com/ca/slawson tami <tlslawson@aol.com> - Friday, December 24, 2004 9:59 AM CST Hi Maria! By now you are probably back from FL and I hope you all had a wonderful time! Tatiana continues in my prayers. I know she will help you through the holidays and bring smiles to your faces! Lisa Post <LMPOST@cox.net> - Sunday, December 19, 2004 7:33 PM CST I am so happy to know Tatiana if walking, I just can't wait to see her. I hope she continues to do remarkably well. Great job, love you. Letty <lettynazario@yahoo.com> Riverside, CA Riverside - Wednesday, November 10, 2004 11:55 AM CST Hooray for walking!!! Can't wait to see the new pictures! Lisa Post <LMPOST@cox.net> - Friday, November 5, 2004 4:38 PM CST Hi Tatiana and family, its nice to know you are doing well. I can't wait to see you. Huggs and Kisses. Letty <lettynazario@yahoo.com> Riverside, CA - Wednesday, October 13, 2004 3:12 PM CDT Good Evening! Just checking on you. Ann Schouten <elizabethschouten@jetblue.com> Salt Lake City, UT - Wednesday, October 13, 2004 2:14 AM CDT Just wanted you to know you have another Hurler mom rooting for you and your family - - especially Tatiana! What a beautiful little girl you have. We have all been blessed to have such great kids. My little one didn't survive his transplant but I still involve myself with MPS and research. Please feel free to visit ^^REESE^^ when you can. God bless!! Shawn, Taylor, & ^^REESE^^ Coble <selboc@aol.com> Winston-Salem, NC - Wednesday, August 25, 2004 8:03 AM CDT hi thank you so much for checking in on katilynn.to answer you question katilynn has not been sick as often and i am a firm beliver in the ert before katilynn started the ert she just wanted to lay around and just watch tv and katilynn just started taking the ert in october and now katilynn is running and playing and acting as like a normal 3 year old its just that she doesnt have a good vocalulary right and cant say a whole lot her liver and spleen are back down to normal which the ert did that for her.so i do recommend that for you.please feel free to email me or if you want to talk my number is 606-298-0096 i hope this helps you katilynn ert is every 2 weeks. kathy and katilynn preston <katilynnsmom@yahoo.com> tomahawk, ky usa - Friday, August 20, 2004 3:22 PM CDT Hello there..we just wanted to tell you that you have an adorable little girl...we have a friend who has a daughter that has Hurlers and we were looking through and saw your webpage.. Steven and Anita Marcum <mrmustang87@yahoo.com> lovely, ky united states - Friday, August 20, 2004 3:15 PM CDT Hi. It's good to see your beautiful family. Glad everything is going well. We're about to transplant our second child and newest. Sean is 5yrs. old, and 4yr post transplant(Very successful). Shaye Lynn is 2 months old and getting ready for transplant. They both are identical antigen matches. Just can't use brother. Nervous because she's so young. You give us a little ray of hope. They tell us the younger they are, the better-we hope this holds true. We'll keep visiting for updates of Tatiana. May you continue to be blessed, Laura La Beth (Texas) Laura La Beth Santa Fe, TX USA - Wednesday, August 4, 2004 1:31 PM CDT Just dropping by to let you know that I linked your site to mine at MPS Forum.com on the “Links” page. I hope this was okay and thank you for sharing your site with other MPS/ML parents! I enjoyed looking at your pages! Jessica (Mom to Kaity~Hurler Syndrome age 13) Jessica Wellman <jessicalw@earthlink.net> Crandall, IN USA - Friday, July 30, 2004 7:45 PM CDT Hi Maria, I have been thinking about you and our cute little one. Has Tatiana started ERT yet? Feel free to contact me anytime. And tell Letty I expect her to attend the run this year!! hehehe Also have you check out the www.mpsforum.com yet? Lots of wonderful MPS families. You don't have to join if you don't want, but you can read all the parent's posts! I hope to see you there on our "little island" Please keep me updated on Tatiana progress and you and your whole family! Please know you are in my prayers! Love and Hugs Tami ( www.caringbridge.com/ca/slawson ) <TLSlawson@aol.com> La Verne, CA - Friday, July 30, 2004 3:56 PM CDT I AM SO HAPPY TO KNOW TATIANA IS STILL DOING GOOD SINCE I LAST SEEN HER. MARIA, YOU HAVE DONE THE RIGHT THINGS FOR NANIE KEEP ON DOING WHAT YOU'RE DOING. TAKE CARE, HUGGS AND KISSES. LETTY <lettynazario@yahoo.com> RIVERSIDE, CA RIVERSIDE - Tuesday, July 27, 2004 12:13 AM CDT hi maria&titiana hi my name is kathy and i have a daughter that is 3 years old and she has hurlers syndrome.i found your web page and thought i would write you i always like ti talk to new people who has hurlers children.titiana is so beautiful i love those easter pictures.so feel free to visit my daughters web page her name is katilynn.www.caringbridge.org/ky/katilynnsmom kathy and katilynn preston <katilynnsmom@yahoo.com> tomahawk, ky usa - Friday, July 23, 2004 10:28 PM CDT HI FAMILY I AM SO HAPPY TATIANA IS DOING GOOD SINCE YOUR VISIT WITH US. IT WAS GREAT HAVING YOU OVER AND YOU KNOW OUR HOME IS YOUR HOME. MISS YOU ALREADY, ESPECIALLY TATIANA I REALLY ENJOYED SPENDING THAT ONE DAY WITH HER AND BEING ABLE TO BOND. I DON'T UNDERSTAND WHY SHE GIVE MOMMY SUCH A HARD TIME, BECAUSE WHEN SHE WAS WITH ME SHE WAS SO GOOD, HAPPY, AND MOST IMPORTANT IS SUCH GOOD HEALTH. WELL, I MISS ALL OF YOU AND HOPE TO SEE SOON. TATIANA YOU LOOK SO PRETTY WHOY WHOY! (MARIA MAKE SURE YOU TELL HER THIS FOR ME. I KNOW SHE LOVES TO HEAR IT). HUGGS AND KISS. LETTY <lettynazario@yahoo.com> RIVERSIDE, CA - Friday, July 9, 2004 0:08 AM CDT HI FAMILY IT IS REALLY NICE TO KNOW TATIANA IS STILL DOING WELL SINCE YOU LEFT CA. MISS YOU GUYS ALREADY. IT WAS GREAT HAVING YOU OVER AND REMEMBER OUR HOME IS YOUR HOME. IT WAS VERY NICE TO HAVE THE CHANCE TO HELP LOOK AFTER TATIANA, BUT WHAT I DON'T UNDERSTAND IS WHY SHE GIVES MOMMY SUCH A HARD TIME, SHE WAS VERY GOOD, HAPPY AND MOST IMPORT IN GOOD HEALTH! SHE IS JUST SO SPOILD AS SHE SHOULD BE.I LOVE IT THAT WHILE YOU WHERE HERE THE BABY DID SO WELL THANK GOD! WELL I PRAY THAT TATIANA CONTINUES TO DO WELL AND YOU KEEP HANGING IN THERE. WE LOVE YOU, HUGGS AND KISSES. P.S. SIS YOU ARE A GREAT MOM & I AM PROUD OF YOU! PLEASE TELL NANNY "YOU ARE SO PRETTY WHOOY WHOOY!" FOR ME (I KNOW SHE LOVES TO HEAR THAT). LETTY <lettynazario@yahoo.com> RIVERSIDE, CA - Friday, July 9, 2004 0:07 AM CDT Hi Tatiana, We just saw your pictures on the web. You look so beautiful!!!I really miss you. Hope that someday soon I'll be able to see you again. My Watson Family says "Hi". I Love You Tia Soledad Soledad Garcia <sg@AOL.com> Corona, Ca USA - Thursday, July 1, 2004 11:15 PM CDT Hey this is Evline's mom Tammy. With me at Duke is her dad Jerry and Grandma Cheryl who started up Evline's website. I am glad that everything is going good for you all. I hope it will always go good for you and your family. It is a hard thing to deal with and still to this day it is hard for me. Evline is still on oxygen. I am hoping she will be off of it soon. I still don't quit understand it all but I am learning as we go. She has her BMT on July 9th and it scares me to even think about what could happen. Tammy <evlinethomas@yahoo.com or tammy_thomas_18@yahoo.com> Evarts, KY Harlan - Thursday, June 24, 2004 8:37 PM CDT Hey Sweetie, I'm so glad you had fun in CA! I bet Letty had the best time babysitting! Please know we are all praying for you. Love and Hugs, Tami ( www.caringbridge.com/ca/slawson ) <TLSlawson@aol.com> La Verne , CA - Monday, June 21, 2004 8:18 PM CDT Have a wonderful vacation! This is great news to start the ERT for Tatiana. God Bless! Lisa Post <ltjpost@cox.net> - Friday, June 11, 2004 7:17 PM CDT Just checking in on you guys. Sorry to see that your little one has been sick. I hope the Enzyme replacement therapy works. May GOD bless and keep your family well, especially little Tatianna. Cheryl @ www.caringbridge.com/ky/evline <evlinethomas@yahoo.com> Evarts, KY USA - Tuesday, May 25, 2004 3:57 PM CDT Maria, just checking in on you, I know Nanny is still in the hospital and I pray that she gets better and comes home soon. I also remembered Natasha on Saturday morning and prayed for her and all the children struggling with this desease. Take care, lots of love, huggs and kisses. Letty <lettynazario@yahoo.com> Riverside, CA Riverside - Wednesday, May 19, 2004 12:31 AM CDT Maria, I remember it like it was just yesterday! Natasha remains so vivid to me and dear to my Heart!! She is in Heaven and I know her and Alexis are best friends. I will always love you all and miss you so much!! Jody <rufusandjodi@yahoo.com> - Tuesday, May 18, 2004 9:27 PM CDT MARIA AND FAMILY, I HOPE AND WISH ONLY THE BEST AND PUREST THOUGHTS AND WISHES, ALONG WITH A PRAYER THAT TATIANA CONTINUES TO PROGRESS DAILY PHYSICALLY AND SPIRITUALLY. MAY GOD BLESS YOU ALL WITH THE STRENGTH,WILL, AND COMFORT THAT WILL BE NEEDED TO HELP TATIANA OVERCOME ANYTHING THAT MAY IMPEDE HER PROGRESS. TAVITA MULITALO <TAVITA.MULITALO@JETBLUE.COM> WEST VALLEY CITY, UT USA - Tuesday, May 18, 2004 1:36 AM CDT Maria, I'm so glad I visited your site today. I had no idea that this is the 3rd anniversary of Natasha's passing. It must be very hard. Please know that it saddened me to read that today. I hope little Tatiana is doing better this afternoon and will be able to go home tomorrow! Hugs and prayers! Lisa Post <ltjpost@cox.net> South Windsor, CT - Saturday, May 15, 2004 5:24 PM CDT Hi, thanks for visiting Evline's website and leaving your web address. I'll be in often to check on your little one. She is so adorable. I may not always sign in because I don't always know what to say. I saw your pictures. You have a beautiful family. It doesn't always seem fair that our children and grandchildren have to experience so much. But I believe GOD keeps a special eye on them. Keep up the good work. HUGS AND KISSES, Evline's Grandmother, Cheryl. Cheryl <evlinethomas@yahoo.com> Evarts, KY USA - Saturday, May 15, 2004 8:15 AM CDT I hope you have a wonderful and Very Happy Mother's Day!!! Love and Hugs, Tami Slawson (www.caringbridge.com/ca/slawson ) <TLSlawson@aol.com> - Saturday, May 8, 2004 11:53 AM CDT MARIA IT'S NICE TO KNOW NANNY IS DOING MUCH BETTER. SHE REALLY SCARED ME THE DAY WE DROVE HER TO THE HOSPITAL ON THAT EASTER WEEKEND. THAT WAS NOT FUN AT ALL. I WANT YOU TO KNOW, THAT I AM VERY PROUD OF YOU AND YOUR ABILITY TO HOLD IT TOGETHER. NANNY IS HERE THANKS TO YOUR LOVE AND TOTAL DEDICATION FOR HER. KEEP DOING IT AND DO NOT GIVE UP, JUST GET A LITTLE REST HERE AND THERE OKAY. I AM GOING TO CONTINUE TO PRAY FOR TATIANA AND THE FAMILY. WE LOOK FORWARD TO SEEING YOU IN JUNE AND HOPEFULLY NANNY IS DOING GREAT THEN. LOTS OF HUGGS AND KISSES. *****HAPPY BIRTHDAY SISTER***** I LOVE YOU! LETTY <lettynazario@yahoo.com> Riverside, CA Riverside - Monday, May 3, 2004 12:15 AM CDT Hey Guys, I'm sorry I have not posted in a while. I always check on you and your always in my prayers. If you do come to CA, I would love to meet you all. We are about 30 Minutes from Disney Land. We could "Do Lunch". LOL Please know your always in my prayers! Love and Hugs, Tami Slawson ( www.caringbridge.com/ca/slawson <TLSlawson@aol.com> La Verne, Ca - Sunday, May 2, 2004 3:11 PM CDT Maria, What a little cutie you have it is nice to see her cute little face. May God bless you. Tracy Sain Tracy <tracy.sain@mountainstarhealth.com> Salt Lake City, ut - Friday, April 30, 2004 2:58 PM CDT Love the new pictures! Just beautiful. Tatiana is a doll. Sorry that some post-transplant issues still pop up, but you all hang in there and try to relax. God Bless! Lisa Post <ltjpost@cox.net> - Thursday, April 15, 2004 10:10 PM CDT how scary, i am so sorry you guys went throgh that...hospitals can be very challenging, especially when they don't see that something is an emergency....i am so glad you guys insisted on them seeing her...Wow, one year that is so awesome!!!! we love you guys, Nicole, Chris & Devon Nicole Merritt <nicmorgan@earlthlink.net> Sunland, Ca. U.S.A. - Thursday, February 26, 2004 1:10 PM CST HI FAMILY HOPE YOU ARE DOING WELL. HAPPY BIRTHDAY TATIANA!!! WE LOVE YOU BABY! MARIA PLEASE GIVE NANA A BIG HUG & LOTS OF KISSES FROM ALL OF US HERE IN CALIFORNIA. TAKE CARE, LOVE ALWAYS LETTY <lettynazario@yahoo.com> Riverside, CA - Tuesday, February 24, 2004 6:37 PM CST Wow Maria never a dull moment!! I pray things are moving in the right direction now. Oh and Happy late birthday my Precious little one. You all take care now. Jody Wiggins <rufusandjodi@yahoo.com www.caringbridge.org/ks/alexiswiggins> - Saturday, February 21, 2004 10:43 AM CST Boy, that sounds like some stressful times! I hope Tatiana is doing better now. Happy 1st Birthday a bit early! Lisa Post <ltjpost@cox.net> South Windsor, CT - Friday, February 13, 2004 8:20 PM CST HI Maria, Joe, and family... Kade and I are just seeing how you are doing. Give us a call and let us know how everything is going. Adam Benak <Lssg79@hotmail.com> Coeur D'Alene, Id US - Monday, February 2, 2004 9:59 PM CST Maria, ty rodom ne iz Rossii?? We are from Ekaterinburg, Russia. Our Doughter Daria is diagnozed as a child with MPS I Hurler phenotype. We hope You can see our e-mail if we don't check the box " Its ok to show my email in the guestbook"... Leonid and Svetlana Krasavin Ekaterinburg, Ural Russia - Monday, February 2, 2004 5:23 AM CST Hello Just checking in on you all! I Pray things are going better! Miss you Jody <rufusandjodi@yahoo.com www.caringbridge.org/ks/alexiswiggins> - Tuesday, January 27, 2004 8:17 AM CST THanks for the update. I hope the vomitting eases up real soon! Lisa Post <ltjpost@cox.net> - Friday, January 23, 2004 7:54 PM CST Maria, nice to know Tatiana is doing better. I will pray for her to continue doing well. Give Tatiana, Alex, and Gradie lots of hugs & kisses from me. Hugs & Kisses for you too! Love you. Letty <lettynazario@yahoo.com> - Wednesday, January 21, 2004 2:30 PM CST HELLO MARIA (TIA) HOW IS TATIANA DOING, HOPEFULLY GOOD I JUST SAW THE PICTURE OF HER, AND LETT ME TELL YOU THAT SHE LOOKS BONITA ESPECIAL MENTE EN LA ULTIMA FOTO. LOVE YOU ALL Celina, Jorge Jr, & Jorge <celi2jorge@aol.com> Twenty-nine Palms, ca - Wednesday, January 7, 2004 3:39 PM CST Hello to the ever beautiful Tatiana. Just thought we should stop by and check how you are getting along. We hope that you have a wonderful Christmas with your family. Daria had a wonderful day at home with her little brother. We think of you often. Give mummy and daddy a big kiss for us. Love from your Aussie friends the Ward Family - Doug, Trina, Daria and Caleb www.users.bigpond.com/daria99 Trina Ward <daria99@bigpond.com> Brisbane, QLD Australia - Friday, December 26, 2003 0:59 AM CST Glad to read Tatiana was able to go home last Friday. So sorry she gave you a scare like that though! I hope she does fine here on out. Lisa Post <ltjpost@cox.net> - Friday, December 5, 2003 10:13 PM CST Maria, I am so glad Tatiana is finally home and doing well. I will continue to pray for her recovery and for you to continue being faithful and strong. Take care! Huggs and kisses Letty <lettynazario@yahoo.com> Riverside, Ca - Tuesday, December 2, 2003 4:49 PM CST I'll say a prayer for Tatiana's line placement surgery to go smoothly so that you may celebrate Thanksgiving at home! Lisa Post <ltjpost@cox.net> - Tuesday, November 25, 2003 7:05 PM CST Maria, Joe, and Tatiana, Please know we are praying for Tatiana's full recovery! I pray that the Adenovirus is resolved soon. Love, Jennifer & Allison Jennifer Restemayer www.caringbridge.org/nd/allison <jennmarie@bis.midco.net> Bismarck, ND Usa - Thursday, November 6, 2003 4:09 PM CST Maria, I am sorry Tatiana is not doing well. Please remember you must not lose your faith, we can't give up now or ever! You are very strong and Tatian is too, that's why she is still fighting these infections. Hang in there it's just part of the healing process. We will continue to pray for Tatiana's full recovery. We Love You & God Loves You. Letty <lettynazario@yahoo.com> Riverside, Ca Riverside - Monday, November 3, 2003 5:24 PM CST Marie, Joe and Tatiana, Thanks for inviting us to visit your site. We hope the best things come to you. If we can be of assistance, we will be! Jacob & Jayne SLC, UT USA - Saturday, October 18, 2003 12:48 AM CDT I'm keeping your little Tatiana in my prayers. I know it's all overwhelming and nerve wracking, but try to put your faith in God that she will be just fine. Afterall, I'm sure her angel sister is protecting her more than you know! Lisa Post <ltjpost@cox.net> - Friday, October 10, 2003 10:38 AM CDT Hi Maria, I'm sorry that things are so rough right now. I can't imagine how scary this must be and how overwhelming it has to be! I wish you were back in CA too. I would love to meet you and your beautiful daughter. Please know I'm praying for you and I know that soon she will be at 100% SOON! Hugs, Tami Slawson www.mpsrun.com <TLSlawson@aol.com> La Verne , CA - Tuesday, October 7, 2003 8:53 AM CDT I'm so very glad she is doing better as per your last entry. I'm so very impressed with you and your husband. Your strenght & conviction is beyond any that I can comprehend. You are wonderful people & I'm proud to know you. P.S... I saw the pictures on the site... she is indeed beautiful!!!! Daniela <dani_camacho@hotmail.com> Salt Lake City, UT USA - Thursday, September 25, 2003 4:03 PM CDT What great news! Lisa Post <ltjpost@cox.net> - Wednesday, September 24, 2003 7:37 PM CDT Yeah! This is Great news! Love, Jennifer & Allison Jennifer Restemayer www.caringbridge.org/nd/allison <jennmarie@bis.midco.net> Bismarck, ND Usa - Monday, September 22, 2003 9:15 PM CDT Thank God Tatiana is finally home and doing well! Maria, this has been the best news, I am sure she will continue to do well. You have done the right thing! We all love and miss you guys very much. Letty <lettynazario@yahoo.com> Riverside, Ca Riverside - Friday, September 19, 2003 11:46 AM CDT PRAISE GOD YOUR HOME!!!! I Pray things go well for you all. Hang tuff Maria you can do this your a strong Mother!! I love you all and miss you all so much!! Jody <rufusandjodi@yahoo.com www.caringbridge.org/ks/alexiswiggins> - Thursday, September 18, 2003 8:40 AM CDT Hi Maria and Joe, I so glad I found your site. I have been praying for you all since I talked to Letty, but at that time I did not know you had a page. I hope you don't mind if I check on you and pray for you all. I too have 2 MPS babies (well if you call 15 and 11 babies, LOL). We just started ERT and are doing well. Thank you so much for sharing your children with us! I will pray for a quick recovery from transplant! Love and Hugs Tami Slawson www.mpsrun.com www.caringbridge.com/ca/slawson <TLSlawson@aol.com> La Verne, CA - Sunday, September 7, 2003 8:44 PM CDT I am glad Tatiana is doing a better & better every time. Although, she has had her downs, she is so strong and such a fighter! She reminds me of her mommy! Maria, I strongly beleive that you being by Tatiana's side has had alot to do with her getting better. Keep up your spirits and we will keep praying till Tatiana comes home and even after. I Love you all very much. Letty <lettynazario@yahoo.com> Riverside, Ca Riverside - Tuesday, September 2, 2003 6:47 PM CDT As a cyber friend to so many Hurler families, just wanted you to know that I have had Tatiana on my prayer list for a while now and I pray her engraftment is a wonderful success! Love, Lisa Post <ltjpost@cox.net> - Friday, August 29, 2003 2:23 PM CDT MARIA YOU AND JOE ARE VERY STRONG. HANG IN THERE AND KNOW THAT WE ARE ALL PRAYING FOR YOU AND YOUR FAMILY. WE LOVE YOU. TRACY, RAY, LINDSEY AND ZACH :-) TRACY SAIN <TRACY.SAIN@MOUNTAINSTARHEALTH.COM> SALT LAKE CITY, UT - Friday, August 29, 2003 11:25 AM CDT Maria, Just checking in!! Hope your daughter is doing well. I will try and call you soon. Take care!! Jody Wiggins - Friday, August 29, 2003 8:38 AM CDT Maria and Joe, she is just such a little cutie, love the picture of her and daddy, thats just adorable, our prayers are with you guys, Love Merri and Neil Merri and Neil Floto Murray, UT USA - Thursday, August 28, 2003 10:28 AM CDT Hi family, we are so glad Tatiana is doing good. She looks so cute in the pictures. We are constantly praying for her full recovery. Maria, Joe and Alex, I know you must be exhausted, but it will pay off at the end. We love you. Letty & Family <lettynazario@yahoo.com> Riverside, Ca Riverside - Wednesday, August 27, 2003 3:11 PM CDT Joe,Maria,and Family. She is a doll. Thinking about you often. Praying for the time that you can take that sweet little angel home with you. Take care and know that we love you. Tiffany,Monica,Stetson,Hayden,Jaden Tiffany Little <tiffany.little@mountainstarhealth.com> Salt Lake City , ut - Monday, August 25, 2003 4:41 PM CDT Marie, Joe and Tatiana, My name is Jennifer Restemayer, and my daughter Allison was diagnosed with MPS 1 in Jan 2003. I just wanted to let you know we are praying for you and I will check on Tatiana often! I am happy to hear that things are going well for Tatiana right now and I pray that continues. Love, Jennifer & Allison Jennifer Restemayer www.caringbridge.org/nd/allison <jennmarie@bis.midco.net> Bismarck, ND Usa - Wednesday, August 13, 2003 10:00 PM CDT What a great idea for CaringBridge to set up this website. How cute are those pictures of her? Keep your head up and keep the faith. She is a precious little girl..I have a little poem that was given to me years ago that I keep on my wall that gives me renewed hope when things are not as we would like them to be. Hope it gives you some comfort " If God brings you to it........He will bring you through it". Were praying for your family. Love Cheryl Cheryl <cleithead@attbi.com> Murray, Ut USA - Monday, August 4, 2003 5:21 PM CDT Maria Sorry to hear about the little set back I pray things get back on the right track very soon. Hopefully with some good luck you all will be home again soon. I"ll keep my fingers crossed and keep Praying. Love you all Jody Wiggins - Sunday, August 3, 2003 5:45 PM CDT We are praying for you. Ruth Palmer <rpalmer@cusa.com> Murray, UT - Wednesday, July 30, 2003 9:35 AM CDT Tuckett Family, Le deseo lo mejor para su hija, My prayers are with you. I commend you for being a strong family. May god be with you at all times. My heart goes out for your daughter, she's so precious and adorable... :) Eleika Urena Salt Lake City, UT UT - Monday, July 28, 2003 8:53 PM CDT Dear Tuckett Family, Thank you so much for inviting us to Tatiana's Web page. She is a darling. We know that you are very special people to be chosen by our Heavenly Father to care for Tatiana. We know that he knows each and everyone of us. He is mindful of our needs and will help us according to his will. We want to share with you a primary song that comforts our family during difficult times. The words are very meaningful and recognizes a loving Heavenly Father who will never forsake us, but will bless us with peace and guidance through this temporary mortal life. I Am a Child of God (1st Vs.) I am a child of God, And he has sent me here, has given me an earthly home with parents kind and dear. (Chorus) Lead me, guide me, walk beside me, help me find the way. Teach me all that I must do, To live with him someday. (2nd Vs.) I am a child of God, and so my needs are great; Help me to understand his words before it grows to late. (Chorus) Lead me, guide me, walk beside me, help me find the way. Teach me all that I must do, To live with him someday. (3rd Vs.) I am a child of God, Rich blessings are in store; if I but learn to do his will, I'll live with him once more. (Chorus) Lead me, guide me, walk beside me, help me find the way. Teach me all that I must do, To live with him someday. We love you all and were grateful to have met you both. We hope to see Tatiana soon and May the Lord bless you with health and strength to continue life's journey. Love Always, Michael and Josephine Schroeder Michael and Josie Schroeder <josephine.schroeder@jetblue.com> Salt Lake City, UT USA - Sunday, July 27, 2003 2:18 AM CDT Maria~ I love the pictures! She is an angel!! I will keep you all in our prayers and hope for the best!! I love working with you and hope to keep a good relationship with you. Have a great day and keep your head up like you always do!! Love YOU!!! Sue Susan Barnes <susan.barnes@jetblue.com> Riverton, UT USA - Friday, July 25, 2003 6:17 PM CDT Hello my favorite Utah family, I am happy that everyone is ok. Stay positive. You are doing your best and have come a long way. We love and think of all of you often in California! Love and positive energy, Claudia Claudia Ortiz <cortiz76@hotmail.com> Los Angeles, CA USA - Thursday, July 24, 2003 8:53 PM CDT I am a friend of Jody Wiggins and she gave me the link to your page. I also lost a child to Hurler Syndrome, so I can relate to what you have been through. I will be checking your site for updates and following your story. I pray that all goes well and that God is with you as your sweet baby girl fights her battle. Cameron's Page Love from Alabama, Emily Martin <esmw72@yahoo.com> Anniston, AL USA - Thursday, July 24, 2003 5:11 PM CDT Your family is always in our thoughts and prayers. Shauntel, David, Nicholas, and Emmalee <shauntel.lizzarazo@jetblue.com> sandy, ut usa - Wednesday, July 23, 2003 11:58 PM CDT Maria and Family, So glad to see you started a web-site for your Daughter. This will make it so much easier for us all to keep in touch with you. I Pray for your sweet daughter that things continue in the right direction. Love you lots and lots The Wiggins Family Jody Wiggins <rufusandjodi@yahoo.com www.caringbridge.org/ks/alexiswiggins> Elkhart, Ks USA - Wednesday, July 23, 2003 8:50 PM CDT HELLO FAMILY, I AM SO HAPPY TO HEAR TATIANA IS DOING BETTER. SHE FINALLY IS ON FORMULA! (GREAT NEWS!) I WILL CONTINUE TO PRAY FOR YOU TATIANA! I LOVE VERY MUCH! HOPEFULLY WE CAN ALL SEE EACH OTHER VERY SOON. MARIA AND JOE, KEEP YOUR FAITH UP EVERYTHING WILL TURN OUT FINE. THINKING OF YOU ALWAYS. I LOVE YOU GUYS! LETTY <lettynazario@yahoo.com> riverside, ca riverside - Wednesday, July 23, 2003 3:39 PM CDT Praying for you Tatiana Gilda Roveta <gildaroveta@earthlink.net> Salt Lake, UT USA - Wednesday, July 23, 2003 2:44 PM CDT Hello from your Aussie friends. We feel very attached to little Tatiana and love her heaps even though we have never met. After all we knew about you when you were still in your lovely mummy's tummy! Transplant is a very hard time but well worth it when you see the results at the end. Even the "fur" side effects from the drugs are funny to look back on. Daria is powering along since her cord blood transplant and it will be 2 years post CBT on 27 September 2003. We think of you all everyday and send lots of big hugs and kisses your way. Love and best wishes always Trina, Doug, Daria and Caleb Ward http://www.users.bigpond.com/daria99 Trina Ward <daria99@bigpond.com> Brisbane, QLD Australia - Wednesday, July 23, 2003 4:15 AM CDT |
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