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My babygirl was 3 when diagnosed.I am still trying to do some research and learn more about nf1.Hope for the best for Max and the family.Good luck
Kacie williamson <kacie0205@yahoo.com>
plain city , oh - Saturday, July 2, 2011 12:07 AM CDT

Anthony my son is 12 and has NF1. He has a leg length descrepancy and is going to have surgery soon to stop the growth of his right Tibia. I am worried although I know it is a procedure which is done frequently. Does anyone have experience with this, and recover time?
Trista Hensley <tristajorge@yahoo.com>
Tampa, FL USA - Saturday, January 3, 2009 11:36 PM CST

Hi to all of you. I ordered one of the nf canves bags to use at work and you would never gusse that i work in the med feild because i have two or more people a day ask me about my bag and why i have it. I tell them about nf and my son who is 1 years old and how we ourselfs just found out about nf. They ask me all sorts of things so i tell them to go to the ctf.org web site to find out more. I just would like to say good luck to Max and he is in my thoughts.
Angela
Angela Hasenstein
cleveland, wi usa - Thursday, January 17, 2008 7:13 AM CST

Hi Max and family! It's great that your dad is running a marathon! My husband, Dan, is running the LA marathon in March for our daughter Ashley and CTF. It's a terrific way to raise money. Good luck with everything with the marathon, and I'll be praying for you Max!
Love, Becky (coconuts grandma) www.caringbridge.org/visit/ashleyv

Becky V
Federal Way, WA USA - Saturday, January 5, 2008 12:19 AM CST

Hi Max and Mom, What a great website. Max it's so nice to hear such positive things about you. It gives me so much hope for my 11 month old daughter Jordyn. Have a great year.
Sincerely, Jordyn's family
Jodi Visalli <jodism@comcast.net>
Glenside, PA USA - Saturday, January 5, 2008 9:49 AM CST

Hoping 2008 is a happy and healthy year for all of you!
Angela, Alison & Heather <angembal@yahoo.com>
Natick, MA - Thursday, January 3, 2008 3:26 PM CST

Hi Max& Family
I'm Yazilyah my 2 year old was diagnoised with NF1 about 9 months ago, no one else in the family dad or mom's side has this. I am so scared about this never knowing what to expect.Moms always want to protect their kids I feel as I cant with this, my baby has surgery coming up soon to remove a neurofibroma on her right big toe and another right above her clitoris, please pray for our family,I have 2 other kids also, I will keep Max and your family in my prayers, you seem so strong and patient, I hope I can gain that also.
Yazilyah Clary <yatzi28215@yahoo.com>
Charlotte, NC USA - Friday, December 28, 2007 12:37 AM CST

Stopping by let you guys know we are thinking about you. Keeping you all in our prayers.
www.caringbridge.org/visit/lynzeecullum
Dorothy Cullum <mom2all9106@yahoo.com>
- Sunday, November 25, 2007 11:12 PM CST

Hi Max and family,
It has been too long since I last visited. Jay and I both have NF1, and Jay has a plexi too. His is on his face. Glad that I stumbled upon your mom's post at the ctf bb.
www.caringbridge.org/visit/jayandre
Marcy/MJA at the bb
Scottsdale, AZ United States - Saturday, November 10, 2007 5:09 PM CST

Hi Kristen and Max (of course the rest of the family too),
I sometimes see your posts on the CTF BB and came to your site tonight to see your truck. That is awesome. I am the mom of a 10 year old boy with NF1 and 5 other children without it! I'm glad to see that you are doing so well. Jesse, my son, was on your Faces calendar in 2006. Thank you for what you do to raise awareness. It is so important.
Connie Sorman <roo7@frontiernet.net>
Pittsford, NY USA - Thursday, November 8, 2007 7:02 PM CST

Hi, My name is Jennifer. My 4 year old son, Justin, was diagnosed last year. We just recently had his 3rd MRI (one of his UBOs was growing larger and there was concern that it may have been a tumor, but this last one showed no change, praise God). He has motor difficulties and requires PT, OT and Speech. He also has an unrelated hearing loss in his left ear which requires a hearing aid. This is a difficult disease in that we never feel like we can relax - we're always on the lookout for the bad things that could happen, but we hope don't. Thanks for maintaining this site. It's nice the know we're not alone - that other people understand the never ending ache of watching your child suffer. You have our prayers.
Jennifer <jenn@pollockfamily.com>
McKinney, TX - Sunday, November 4, 2007 12:09 AM CST

My name is Danielle and my son Carter, who is 5, was diagnosed with NF1 3 years ago. He has numerous Cafe-Au-Lait spots, a Tumor in his left eye and his chest pallet sticks out severly. Other than that, he is doing great. I believe he is a little behind speech wise, but he is a very smart little boy. It is a little hard for him to concentrate, which of course Teachers possibly see as a little behind, but he knows more info than any 5 year old I know, he is just stubborn. If he does not feel like counting to 100 in class, he will just stop and act as if he does not know, but when he gets home, he is different. The doctors say that he has a Very mild case and should only have very mild problems. Over the last 3 years, all of his MRI's have shown no changes in his tumor. The only thing that changes is the number of spots he has. I have been very silent about my childs NF until now. I need to get more info and here from other parents about their children or themselves. Feel free to contact me at any time and thanks for letting me vent:)

Danielle <singermom@austin.rr.com>
Austin, Tx United States - Thursday, October 25, 2007 12:48 AM CDT

(((Kristen)))
Sending love and prayers to you, Max and your beautiful family. That you still remember my Sean on every birthday and anniversary date is so awesome to me. Thank you so much for your care and kindness!
Wishing you all of God's Blessings, my Friend,
Love,
Patty
Patty <Battypatti@aol.com>
Little Egg Harbor, NJ USA - Sunday, October 7, 2007 12:40 AM CDT

My father had NF.I do as well.As you all know it is hard sometimes.Specially when your other half go looking for smooth skin "pretty" partners.But then something happen and he become dependent on you."Funny" he!
Ingrid Parker <ingridalbert@hotmail.com>
LaGrange, Ga USA - Monday, September 24, 2007 8:16 PM CDT

hi max. Just wanted to let you know that we are thinking of you today and always.
www.caringbridge.org/visit/lynzeecullum
Dorothy Cullum <mom2all9106@yahoo.com>
- Saturday, September 22, 2007 9:56 PM CDT

my name is jennifer , i have nf1, . i was diagnosed at my daughter three year cheek up. i was also seven months pregnate with my third child. my daugter is now seven we go every year for mri's. i have three tumors in my brain , she has one. thank you for posting a web page its comforting to know we are not alone.
jennifer and alyssa <billnjenmoore@cox.net>
mesa, az usa - Monday, September 10, 2007 10:40 PM CDT

Really glad to hear your MRI results are good. Especially in that your intuition/fears crept up before that one. And great news that it worked without sedation, that's huge news.
Eric Rager
Corona, CA - Thursday, July 12, 2007 12:47 AM CDT

Kristen, Max;

Thanks for your prayers for Matthew. I've spent a few moments reading your journal and we are praying for Max and your family.
Eric Rager
Corona, CA - Friday, July 6, 2007 10:21 AM CDT

Hi there Max,
Been thinking about you and your mommy a lot. Please say hi to her from me. Being out of school is great. I love the summer. We will be praying for you on Sunday and hope all goes well with your mri.
Love,
The Quinns-Lisa, Tim, Ashley and Meadow
Lisa Quinn <lquinn@ptd.net>
Greentown, pa usa - Wednesday, July 4, 2007 2:18 PM CDT

Hello to everyone. My first time on your website. My 9 year old daughter was diagnosed w/NF1 as an infant. She's due for her annual MRI & eye exam. Crossing our fingers that all is well. Great job in school Max. Keep up the good work.
Paula Hudak <phudak@woh.rr.com>
Walbridge, OH USA - Tuesday, June 12, 2007 10:59 AM CDT

General Maximus,

Great job in Science class this year! I'm glad I was able to be your teacher. Please keep in touch and make sure you say hello to me first!
Glen Panciocco <gpanciocco@millisps.org>
Boston, MA USA - Monday, June 11, 2007 5:33 PM CDT

hi to everyone here.iam Dave 55 from Washington State,i have NF1.i wish they would of had all the information on nf when i was 10. i felt like i was the only one with it.i had two big tumors on my head and shoulder.the first year in school i was not treated very good in school by my school class mates.but my 1st grade teacher was great.after that 1st year everything got better.i never was good at sports and couldnt run very fast.or do all things the other kids could do,but it never matterd to me.so to all the young people out there remeber you are very very special,i pray for you all.you can e-mail anytime at papabear72551@hotmail.com God bless you all

Dave Adams <papabear7551@hotmail.com>
Sumas, Wa USA - Tuesday, June 5, 2007 10:26 PM CDT

Just stopping by to say hi. Hope all is well.
Angela, Alison and Heather <angembal@yahoo.com>
natick, ma - Tuesday, May 15, 2007 4:44 PM CDT

I really enjoyed your website. My husband was recently diagosed with NF1 at 33 years old. He never had any of the outer symptoms,found the NF1 thru a MRI scan, we thought he had kidney stones and then found out he had hundreds of plexiform tumors. We are going to a clinical trial in Indiana on Sunday. God Bless and Take Care
Kim Petrik <krogers05@aol.com>
Mayport Naval Station, FL USA - Friday, April 20, 2007 6:28 PM CDT

hello i have got nf1 and my 2year old little girl rin has i aswell iv most of the problems you get with it and my little girl has got speach problems and she seems to miss behave sorry for my spelling i have the leaning difficulits aswell i spell things how they sound and not the way they are spelt. did u know with nf sume people can only get along with people alot older than them and younger than there own age group but not there own age i have that aswell. i hope everything go.s well with the race
roxanne <foxyroxy248@hotmail.co.uk>
sheffield, england south yorkshire - Friday, April 20, 2007 11:22 AM CDT

I just had to come see another Max... Thank you so much for coming to see Maxie's page. These kids are so special. I will say a prayer to our angel to watch over this Max... Thank You... Julie

PS.. if you ever need anything just E mail me..
Julie Lagourney (caringbridge.org/va/maxie) <Jujualag@aol.com >
Amelia , VA USA - Wednesday, March 14, 2007 4:28 PM CDT

Wow Max, that EEG pic on your homepage reminds me of Katsie. . .She has a similar one in her photo album. Glad to hear you're doing so well! We will be thinking about you.

Melissa
www.caringbridge.org/tx/katsierane
Melissa <melissa.brock@blockbuster.com>
TX - Friday, March 9, 2007 1:40 PM CST

Hi Max,
I hear you are doing well at school. I'm sorry I can't be there. I miss the 5th grade.
Mrs. Wernig
Mrs. Wernig
- Tuesday, January 30, 2007 6:18 PM CST

Thinking of you and hoping you are doing well.
Angela B
Natick, Ma - Wednesday, January 24, 2007 1:28 PM CST

to max, hi max its shayna jessica and carly we hope you get curred soon.
shayna hopkins jessica fucci and carly hilton <soccermidget333@aol.com>
millis, ma united states - Friday, January 5, 2007 12:20 AM CST

I have nf i am Paige (sisofarmymember for the bulletin board) Nice site!!!!!
Paige
- Sunday, December 31, 2006 3:26 PM CST

Sorry I haven't been by in so long things have been real busy around here. Wishing your mom and you and the rest of the family Happy Holidays
www.caringbridge.org/visit/lynzeecullum
Dorothy Cullum <mom2all9106@yahoo.com>
Indianapolis, In - Thursday, December 14, 2006 12:18 AM CST

Hi Kristen, Max, Scott, Anthony and Noah,
Uncle Larry emailed me your report card today. WAY TO GO!!!! i am sooo proud of how well you are doing with school and everything else you do. Your poem was totally awesome. Maybe you could write more and publish a book.
With love&many hugs,
Aunt Peggy
Peggy Maletta <mmm545@juno.com>
Kennesaw, GA United States - Tuesday, October 17, 2006 8:00 PM CDT

Hi Max.. You have alot in common with my 10 year old daughter Taryn. She also has NF and a astrocytoma, hers is very deep in brain near the thalamus. we are just watching it for now... I hope you have a good year at school..

Melissa Grodhaus <mgrodhaus@neo.rr.com>
Winona , Ohio - Friday, October 6, 2006 5:54 PM CDT

Hey there family,
First sorry it has been so long since I have been to check in on you. Wow 5 days you are a tropper. Thinking of you and wanting you to know that we are praying for you. Tel you mom hi for me. Check on you soon I promise.
www.caringbridge.org/visit/lynzeecullum
Dorothy Cullum <mom2all9106@yahoo.com>
indianapolis, In - Wednesday, October 4, 2006 1:52 PM CDT

Hi Max and Mom---
I just came across your web-page as I was surfing the web to find out more about nuerofibromatosis. I have 3 year old twin granddaugthers and one of them is being tested for this disorder her name is Giovanna. The other twin (Sophia) shows no symptoms. We were told there is now a blood test to diagnose this disease it takes 30 days. She only has the cafe au lait marks right now, but the doctor thinks she is getting the freckling under her arms. Anyway thank you for your site, as it makes us feel better knowing how well you are doing. God Bless.
Debra Joseph <debbie.joseph@bakerpetrolite.com>
Houston, TX USA - Thursday, September 28, 2006 4:48 PM CDT

We just learned of this condition because we noticed some spots (possibly cafe au lait) on our 2 month old son- we are seeing our pediatrician tomorrow to learn more.

Anyway, I am very hopeful that Max does better each day-he sounds like a wonderful boy!
Michael Berg <hayesconnor@yahoo.com>
New York, NY - Monday, September 11, 2006 7:13 PM CDT

HI!This is our first time to your site. My daughters Jordyn and Jessica also have NF1. Jordyn has a plexiform neurofibroma in right hand and arm(already had a finger amputated because of it).She also has seizures,headaches,UBOs,cafe aulaits,and now we are concerned if her UBO is actually a tumor due to her increase in seizures,headaches and hallucinations. Jessica only has cafe aulaits. I feel your pain and your joy! I will keep Max in my prayers! We are so blessed to have these little angels as our children! God Bless your family!
Jackie Waters <jackiedwaters@yahoo.com>
Rocky Mount, NC USA - Monday, September 4, 2006 6:27 PM CDT

I ran across you web-page today. I am so glad to hear about max's school program. I am 30 and have had learning ds since 2nd grade. When I was going to jr high and high school I had the same kind of program. The class that I could I attend in a regluar class room and the rest I went to what they called a LD class. I was a great help to me because i didn't feel as much pressure to make the same grades as the other kids. I'm sure it will be a blessing and an answer to your prayers.
christeena
christeena <dandcm@netzero.com>
mesa, az - Tuesday, August 29, 2006 5:34 PM CDT

Hi. My 4 year old son has NF1. We were lucky - he was diagnosed when he was 2-4 wks old. He has congenital pseudoarthrosis of his right arm. So far we haven't found any fibromas and he is very bright. Knock on wood. Best wishes to you and your family.
Heather Young <heat_her15@hotmail.com>
- Tuesday, August 22, 2006 2:23 PM CDT

Hi, All was thinking of you guys this morning. So I thought I would drop by and say hi and to let you all know that your in my prayers.
www.caringbridge.org/visit/lynzeecullum
Dorothy <mom2all9106@yahoo.com>
- Wednesday, August 9, 2006 6:38 AM CDT

Hey there Max,just checking in. Looks like you are doing super as usual :o) Good news on the schooling issues, of course when you have a super great Mom like you have, she doesn't settle for anything but the best! Keep up the good work buddy! You're in our thoughts and prayers
Tammy <Whaleyz@aol.com>
MI - Monday, July 31, 2006 8:37 PM CDT

My nine-year-old daughter was diagnosed with NF1 shortly after birth. We keep close tabs on her health and have been lucky enough to be virtually asymptomatic - lots of cafe-au-lait spots, axillary freckling, Lisch nodules, and a bit of trunk strength & fine motor issues. Over the past few months, however, she began having seizures. A recent MRI revealed three lesions in her brain - two UBOs and a larger third spot that we are still waiting to hear more on. I came across your site while searching the 'net for info & support. Max & family sound terrific! It's been a comforting experience reading your journal. Now that I know you're here I'll be checking on Max's progress regularly. I appreciate the time you take to share your story.
Michele <ptbem97@yahoo.com>
Leominster, MA USA - Tuesday, July 18, 2006 12:34 AM CDT

I hope everything works out for the best. Thinking of you all.
Angela,Alison and Heather <alisonheathersmama@gmail.com>
Natick, ma - Thursday, July 13, 2006 4:29 PM CDT

Hi, I have NF1 and so does my 12year old son. I have lots of neurofibromos on my skin, but no other problems. My son has lots of cafe o lae spots on him a learning disbility and he has seizures. It is nice to see that you are not alone. I was so happy to have ran across your web site. my day was not going that well and this has helped to add some sunshine.
Lealyson webster and son joshua webster <lwebster@concordefs.com>
- Tuesday, June 6, 2006 8:37 PM CDT

Hi to Max and Max's mom. I was diagnosed as a very young child with NF1. I have a fairly mild case, but I have been through more surgeries than I can even remember. My parents didn't make a whole lot of money when I was a kid, so I didn't get regular MRIs or other medical care.

Max, in reading your website, you sound amazing. I admire your strength. I know things may seem tough at times, but you're lucky to have so many people who care about you and support you.

Best wishes.
Jessica
Houston, TX - Saturday, June 3, 2006 5:33 PM CDT

Hi Max,
My name is Jenna and I came across your site. I was born with a rare bone disease, and I also have lots of Cafe o lae spots. You are a very brave and amazing boy. I love that shinning smile of yours. You are in my thoughts and prayers. I have a bestfriend who has NF type two and she is 11 years old.
www.caringbridge.org/canada/jenna
Jenna <hockeykid@telus.net>
Kamloops, BC Canada - Sunday, May 21, 2006 7:11 PM CDT

i am a 29 year old woman with nf1 and a lot of the symptoms (learning) though they never were diagnosed. I have the skinfold freckling iris spots, cafe au lait spots and a few nurofibramas. I only got diagnosed when i was 8 or 9 at tulane in new orleans, it makes a lotta of since why i struggled. But i got through college and graduate school am a social worker!! just know that this disorder makes us even more uniqiue and special, though it took me nearly 25 years to acccept that Love the page will order the jewelry when have time.
Bonnie Punch <bpunch1245@yahoo.com>
lafayette, la usa - Thursday, May 18, 2006 5:26 PM CDT

I hope everyone is feeling better!
Angela <alisonheathersmama@gmail.com>
Natick, Ma - Monday, April 17, 2006 4:03 PM CDT

Hi Max!
Wow you sure have grown alot since the last time I saw you. I love the picture on your site. JJ says to say a big hello to you. He is always asking how you are.
Debbie <Mistie5649@aol.com>
- Monday, April 17, 2006 6:56 AM CDT

(((Kristen)))
Once again thank you for remembering my Sean. You are just the best when it comes to anniversaries and birthdays! You amaze me with this considering all you have on your plate. I have relatives that don't remember like you do!
I hope Max is doing well and has a wonderful Easter.
Regards to you and your family and thank you again, my friend...
Love,
Patty
Mom to Sean - 09/28/79 - 04/13/03
http://www.caringbridge.com/nj/seanb/
Patty B <Battypatti@aol.com>
Little Egg Harbor, NJ USA - Saturday, April 15, 2006 11:55 PM CDT

HI MAX...having had NF2 all my life is very unsettling at first but then you become used to the idea that you have to keep on going and to see someone affected at this early age I think is terrible. So MAX and mom keep going forward.
take care...
Juan M. Lucero <chanoc455@hotmail.com>
Arlington Heights, MA USA - Friday, April 14, 2006 1:45 AM CDT

Hello to all....I am Mom to Casey...who also has NF1...he is also 8 years old...and truly a brave and happy young man. He currently is under observation for a brainstem glioma of ? size...and this Thursday we will all check into Childrens hospital Wash.DC for a long spinal surgery....we are all very optimistic that surgery will make his daily life much more pleasant...scoliosis/tumors have caused a curvature of over85%...we really don't know what to expect...so if you know of anyone who has gone through this type of surgery...please let us know......
Casey is also on track with school....however this too has been really hard for him as we have ample days of appointments....so many absences.....makes it even harder to stay up to beat. max how do you do it!?! Take care and keep on the lighter side of life!!!!
Donna May <mayfamily@direcway.com>
Midland, VA USA - Sunday, March 26, 2006 11:13 PM CST

Hello Max and family,
What a brave young man you are.I read your peom ,you did a good job and i like how you said as itchy as mosqito bites,I know it is, I know this becase I have NF i have over 2,000 tumors,i hate getting mri,s too.
to Max's family I am a 28 year old female that lives in washington state NF has made my life difficult.I also have four children all with Nf if you ever want to talk I would love to haer from you - Pauline
Pauline <mrtmom3@yahoo.com>
Belfair, WA U.S.A. - Thursday, March 23, 2006 10:47 PM CST

HI MAX HOW ARE YOU DOING? GOOD I HOPE. WELL I WANT TO SIGN YOUR GUEST BOOK. HAVE A GREAT DAY NOW
CAMERON
USA - Monday, March 6, 2006 3:25 PM CST

Hi MAX, hope you are doing well I also have nf1. I was born with a curved tibia. I know what it is like to be in the hospital a lot when your a kid. Hope you continue to do well. You have a great family and teachers who love and care avout you. Best of luck to you and your family!
Karin Elder <kaybe@nycap.rr.com>
Wynanstkill, ny Renessealrer - Wednesday, February 22, 2006 6:54 PM CST

Hi Max and Mommy

Just checking in on you. We think about you often and keep you in our prayers. I showed Lynzee your picture on the main page here to show her what she will look like when she goes for a EEG from March 15-17. She thinks it will be cool cause she will be on T.V those 2 days. We both send our love and hugs.
Thoughts and prayers.
Dorothy & Lynzee Cullum <mom2all9106@comcast.net>
Indianapolis, In - Monday, February 13, 2006 3:02 PM CST

Thinking of you Max and your family! We can't know your daily struggles, but are united with your family to find effective treatment and a Cure for NF.
Julie Elmquist - Parker's Mom (NF2) www.runforparker.com <CureNFtoday@aol.com>
Ankeny, IA - Saturday, January 28, 2006 6:06 PM CST

I'm sorry to hear that Max is having such a hard time. I hope that you are able to get him into the new school. It sounds like it would be great for him. We are thinking of you all.
Angela <alisonheathersmama@gmail.com>
natick, ma - Sunday, January 22, 2006 12:55 AM CST

I read Max's case to help me to understand what my daughters are going through they both have nf1. One is now unable to walk the other is having seizures.
Fred Mann <fredmann@blueyonder.co.uk>
Falkirk, UK - Friday, January 6, 2006 3:26 PM CST

Hi Max Just checking in on you. Sorry to hear you had to have an EEG. Ihope you have a Happy New Year and a Healither one to. Tell your Momma Lynzee said Hi and she can't wait on Nascar season.
Dorothy Cullum <mom2all9106@comcast.net>
- Sunday, January 1, 2006 6:04 PM CST

Hello to Max and mum
I have been reading some lovely stories on here and the lovely messages.I wish I had visited this site sooner. I have recently lost my gorgeous little brother to metastatic sarcoma,nf1 cal spots,learning dif' lisch nods and other various signs. Barry was 24 and I dont want to scare anyone but I cant state it enough that these children and young adults need to be monitored more regular. Unfortunately Barrys was in his chest cavity and due to another lump on neck,which was blamed for the painful arms he had experienced,it was missed. Had he had reg' scans this might of turned out differently.
We will be raising money for this charity tomorrow at his funeral.neurofibromatosisassociation.co.uk
I wish you all well.
sharron wilson <slimsharron@hotmail.com>
norwich, norfolk england - Wednesday, December 21, 2005 3:13 PM CST

Hi Max! I hope they got some definitive results from your EEG and were able to help you get feeling better! My 8 year old son has NF2 and I'm going to show him your cool site! Take Care,
Julie <CureNFtoday@aol.com>
IA - Tuesday, December 13, 2005 3:20 PM CST

Hey there Max...sorry to here you weren't feeling well. That nasty cold stuff seems to be going around a lot! Hope you're up and feeling better real soon! Take care buddy and stay strong! We think of you often and you're in our prayers!
Tammy <Whaleyz@aol.com www.caringbridge.org/mi/tay>
MI - Sunday, November 27, 2005 5:57 PM CST

My son also has NF1. It's so hard to deal with. I admire your strength! God bless you both!
Ana Counts <anaplus3@yahoo.com >
Peoria, AZ USA - Sunday, November 6, 2005 3:58 PM CST

Wow, such a handsome guy! Hope your Halloween was great and you received a lot of treats.
Thank you Kristen for signing Sean's guest book. It means so much to me that he is not forgotten.
Hope all goes well with neurologist today! Keep the POKWC board posted if you can.
Love,
Patty
Mom to Sean 09/28/79 - 04/13/03
http://www3.caringbridge.org/nj/seanb/index.htm

PattyB <Battypatti@aol.com>
Little Egg Harbor, NJ USA - Tuesday, November 1, 2005 0:33 AM CST

Hi, Max and Mom
Just checking in on Max. How are You doing Max? Hope you are likeing school. Well I gotta go for now check on you later.
Dorothy Cullum <mom2all9106@sbcglobal.net>
Indianapolis, In US - Tuesday, October 4, 2005 10:47 AM CDT

Hi Its Lynzee's mom just wanted sat what a cute boy you are. Glad their are lots of people tring to find a cure.
Keep checking back on you Max.
Dorothy Cullum <mom2all9106@sbcglobal.net>
Indianapolis, In - Thursday, September 8, 2005 11:55 PM CDT

My daughter, Kaity, was diagnosed just this year with NF, she is also a 4th grader...thanks for getting the word out about NF. I'm glad there are people like you out there raising the awareness!
bev jenkins
- Thursday, September 8, 2005 11:32 AM CDT

Max, you're such a handsome boy! Enjoy the start of school!We are praying for a cure! Thanks to you
and your family for helping get to that goal!
The Ryan Family <loriryan340@msn.com>
- Tuesday, September 6, 2005 8:30 AM CDT

HI Max you look so happy that rusty won the race i just wont to say your not a lone me and my son both have nf im 25 and my son chase is 7mth old and we just found out that he has it to so just keep your head up and never let the sun stop shining
tasha <navywifetahsa2@aol.com>
virginia beach, VA usa - Tuesday, August 16, 2005 10:11 PM CDT

I
HOPE THEY FIND A CURE TO THIS DISORDER SOON
melanie cerciello <nickozzfest@AOL.COM>
holtsville , ny 11742 - Thursday, August 11, 2005 11:19 PM CDT

God bless you and your family, and esp. MAX! My daughter, Jessica, is 7 yro and has NF1 - leg length discrepancy, lots of CAL's, and a small neurofibroma on left shoulder blade.
Brenda Sanders <Brenda.Sanders@fritolay.com>
Casa Grande, AZ USA - Tuesday, August 9, 2005 9:54 AM CDT

i have alot of quesdtion
shamil <shamilmaha28@yahoo.com>
teh, iran - Tuesday, August 9, 2005 3:57 AM CDT

Just checking in...wow, his ct scan went quick! Tay's MRI's take up most of the day. You're right...no news is good news! Let me know when the 'official' good news comes in. Sounds like you all are having a wonderful summer! The weather here has been excellent!! Well take care, Max is in our prayers!

Tanny <Whaleyz@aol.com>
Mecosta, MI - Saturday, July 9, 2005 2:52 PM CDT

Hi Kristen, Scott, Max, Noah & Anthony - This really is a nice webpage - I saved your email as new before I left on vacation, and I'm glad to hear that all is well, and you are doing ok....Hope to see you soon.
Love to all of you, Auntie Jean
Jean Day <jellenday@aol.com>
Oxford, MA USA - Wednesday, July 6, 2005 8:32 PM CDT

Hey Max, just popping in to say hi! Looks like your doing awesome as usual...keep up the good work. Sorry to hear you had that nasty rotavirus. I do child care and a little guy here had it, nasty nasty stuff. Sure glad Taylor never caught it. Hey, when is your last day of school? Enjoy your summer and I'll be check in again soon :o)

Tammy <Whaleyz@aol.com>
MI - Monday, June 6, 2005 8:51 PM CDT

Kristin, I just read your post on the NF board. What a scary thing. I'm glad that Max is o.k. and hope that this will lead you to some answers and solutions. He sounds like such an amazing kid!
AJ (Ann, Jenna's Mom) <annjongsma@yahoo.com>
- Saturday, May 14, 2005 9:39 PM CDT

This is a great website. I have NF1 and scolosis. My 5 year old daughter has NF1 also with speech problems. She also has a tumor growing in her left eyelid. She has had 4 surgies on her eye to debulk the tumor. She also is developmental delayed. This site is very encouraging.
April Simmons <apr_de_sim@msn.com>
Jackson, ms usa - Friday, May 6, 2005 10:47 PM CDT

Hi Max....WOW, you are doing super, I shouldn't be suprised by that...just super happy is all. We sure think about you a lot and you are certainly in our prayers! Take care and we will check in on you again soon :o)

Tammy and Sweet Tay www.caringbrige.org/mi/tay <Whaleyz@aol.com>
MI - Thursday, April 28, 2005 12:28 AM CDT

Hi Max !
I enjoyed your web site so much. I am a 47 year old Christian woman who also has NF and battles with the affects of NF each day. I have had many surgeries and I am facing major back surgery to correct a serve scoliosis. God is still good. I am so blessed. I have a wonderful husband,family church family and some spoiled dogs,1 cat and parrots. You are a amazing young man. Thank you for allow God to use you to help other people. I will be praying for you and your family.
Terri <foxies@comcast.net>
Tulare, CA Tulare - Friday, April 15, 2005 0:03 AM CDT

DEAR KRISTEN,
WANTED TO SEND A PERSONALLY WRITTEN THANK YOU FOR RESPONDING TO MY REQUEST FOR ASSISTANCE ON THE NF DISCCUSSION BOARD. I HAVE RESPONDED IN MORE DETAIL AT THEIR SITE. I AM STILL TRYING TO LEARN THE NAVIGATIONAL PATHWAYS OF RESPONDING ON THE DISCUSSION BOARD. THANKS AGAIN FOR YOUR INPUT.
DEBI SHACKOWSKY <DSHACKOWSHY@TAMPABAY.RR.COM>
HOLIDAY, FL USA - Thursday, March 17, 2005 10:25 PM CST

Hello! I'm so sorry to hear about your awful ER time...I hope your letters get results!! More power to you!

Max is a very handsome boy--great page here. Good luck getting the answers you need!
Best,

Kristin (with an "i"--got spelled your way my whole life : ) ), Genna' mom (from the NF board) <dkacams@juno.com>
Warren, NJ 07059 - Monday, March 7, 2005 9:39 PM CST

Kristin,
Just visiting from the NF Board. I'm sooooo sorry about your e.r. experience. That's absolutely terrible and it makes these times so much worse for everyone involved. Like it's not hard enough as it is. I'm sure you're a great advocate for Max. He looks like a real sweetie. Hang in there. Hope some answers come soon.
AJ (Ann, Jenna's Mom) <annjongsma@yahoo.com>
- Thursday, February 24, 2005 8:24 PM CST

hello
Matthew <BETHDULKIS@VERIZON.NET>
Medfield, Ma USA - Wednesday, February 16, 2005 10:15 PM CST

Hi Max and family,
Max - I met your mom at a NF conference in New York in October 2004. She is a neat lady who loves you a bunch. Also, I wanted to tell you that you are a brave boy and all of us parents of kids who have NF are so proud of you for being such a trooper at all your doctor appointments. Keep up the good work! Kristen - love the site, Max is a lucky boy.
Lesley O.
Bigelow (aka Toad Suck), AR USA - Friday, February 11, 2005 8:53 PM CST

Hi Kristen,
It was great to read the update on Max. You are amazing with this and all you do as a mom to all your boys. I do hope it's true that "God only gives those he can depend on such precious cherubs" I know how challenging day to day life can be from time to time and I know the joy and amazement it brings equally as often too!
Sandi
Sandi Indelicato <Sandilandrc11@aol.com>
Uxbridge, MA - Friday, January 21, 2005 1:01 PM CST

Hello, it was a pleasure to read about your wonderful family. Max reminds me alot of my son Dylan who is a 7 yr old boy with many of the same complications and challenges that that Max has. He too is an amazing young boy. Take care of yourself and your family. Happy Holidays!
Patty Flynn <PFlynn006@msn.com>
Medford, MA - Thursday, December 9, 2004 10:42 PM CST

Hi daughter Kristen and Son-in-law Scott. Been here a few times.You guys are doing a great job taking care of Max and handling his twin brothers Noah and Anthony. Happy Holidays. Love Dad...PA
Larry W. Maletta
Natick, MA USA - Wednesday, December 1, 2004 10:53 AM CST

Hi from another NF mommy!

http://mysite.verizon.net/resoeyos
Crystal <kreger3@msn.com>
Pinckneyville, IL USA - Wednesday, November 24, 2004 10:13 AM CST

Hello and best wishes to you and your family from another NF mommy!
Ann (AJ--mom to Jenna) <annjongsma@yahoo.com>
Woodridge, IL - Tuesday, November 23, 2004 7:59 AM CST

Hello

I am new to all of this and I just have one question why are you leaving nf.org for a while?? I am just wondering because my doctor was the one who told me about this site because me doesn't know much about nf1. Any true honest answers would be appeciatied. Thank You
Chrissie Johns <banesdevil5@aol.com>
Poca , WV USA - Thursday, November 4, 2004 8:55 PM CST

Hey Kristen and Max, Cute EEG pic....he certainly was wide awake...lol. Glad to hear things are staying stable,email me a pic of that glow in the dark skeleton...I'd LOVE to see it. Hope you had a great Halloween :o)

Take care,
Tammy <Whaleyz@aol.com>
MI - Monday, November 1, 2004 8:26 PM CST

Hello Kristen & Max!
Great website. We really like the photo of the cement truck, Way Cool!
Take Care.
Love,
Shannon & Darryl
www.RaceForNFresearch.org
Darryl Chene & Cousin Shannon <NFmarathon@aol.com>
Detroit, MI USA - Thursday, October 21, 2004 8:46 PM CDT

Max: I am glad to hear your checkup went well and wish you the best. Have a great Halloween!
John
NY, NY United States - Monday, October 18, 2004 10:37 PM CDT

Hi max, I'm so glad your check up went well and thanks for letting me visit your web site i found it very interesting. your a brave boy! take care Mary DellaCamera
Mary DellaCamera <Mdella9694@aol.com>
Millis, Ma usa - Monday, October 18, 2004 12:20 AM CDT

Congratulation to Max for his good checkup and for being so brave!! I'm glad to learn more about his condition and the Den 3 Webelos Scouts are glad they can help to raise money for the NF Foundation.
June Murphy (Den Leader - Webelos Scouts Den 3)
Millis, MA USA - Sunday, October 17, 2004 12:47 AM CDT

I don't know what happened to my first entry. Max is a special grandson. He is a very caring person. I strongly believe he was put on this planet to do something special. His Pa and Gramma feel he has accomplished that already by just being here. Go #24.
Larry W. Maletta, Pa <Grampdude@aol.com>
- Friday, October 15, 2004 11:37 AM CDT

We Know Max is an awesome boy. I believe he was put on this planet to do something special. Time will. His Pa (grandfather) already thinks he has already done something special just by being here. Love Pa
Larry W. Maletta <Grampdude@aol.com>
Natick, MA USA - Thursday, October 14, 2004 8:09 PM CDT

Hi Max,

You look like the happiest robot I ever saw. You are such a super boy.
Love you bunches,
Aunt Peggy
Peggy <mmm545@juno.com>
Marietta, Ga USA - Saturday, October 9, 2004 5:14 PM CDT

HI Max from Jordyn and Jessica Waters. They are 5y and 3yo and also have NF1. Jordyn has a plexi in her right hand.
Jackie Waters <jackiedwaters@yahoo.com>
Rocky Mount, NC USA - Tuesday, October 5, 2004 7:58 PM CDT

Loving the picture of Max in the baseball uniform!!! Only you would know how to whip up a website! It looks great.
Dawn <D.Lane3@verizon.net>
Millis, MA USA - Monday, September 27, 2004 10:46 AM CDT

Great informative website to keep up to date on my nephew (Max)and new info on NF. Always remember Max- GO RUSTY!!!!
Larry Maletta II <LM2@erlenbach-usa.com>
Kennesaw, GA USA - Monday, September 27, 2004 9:20 AM CDT

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