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This site was created to keep Breanna's family and friends updated on her health.
My name is BREANNA CORINNE ARTHURS I am better know as BREE I was born on September 19, 2002, weighing in at 5 lbs and 4 ounces, a beautiful healthy baby. My mom is making this page for me ****************************************************************************** I was diagnosed with Krabbe disease on January 16, 2004. I started to show symptoms early around 4 weeks of age. however, the hospital was not too concerned but my mom was. Early symptoms include: difficulty with feedings, tight muscles, excessive crying that can last days, weeks or months, I felt yuchy and cried for around 6 months.
This disease is going to progress until my Bree can no longer swallow, seizures, infections, blindness, deafness, and lose all abilities to move. This disease affects the Central and peripheral nervous systems, which involves movement, breathing, Heart, body temperture. Krabbe disease is a form of Leukodystrophy a neurodegenerative disease. Until recently the only treatment options were limited to symptom management and palliative care. There is no cure but if diagnosed early enough there is now a new treatment. Cord Blood Transplant is the only hope for children with Krabbe disease. However most times once a child starts to show symptoms it is to advanced for the treatment, That is why newborn screening is so important. Adding this test to newborn screening WILL save my friends lives.
HELP ME SAVE MY FRIENDS LIVES!!!!!!!!
This disease affects 1 in every 100,000 births. Also 1 in 125 of us carry this horrible disease, it takes 2 carriers to have an affected baby. This disease is a terminal illness with a life expectancy of 8-16 months of age without the transplant.
Our little Angel fought so hard she is was just so beautiful, pure of sin, a pure heart. Our angel went to Heaven on January 18, 2005. She is so very missed.
God saw you getting tired when a cure was not to be So He put his arms around you and whispered, "Come to me." You didn't deserve what you went through and so he gave you rest God's garden must be beautiful He only takes the best And when he saw you sleeping so peaceful, free from pain We could not wish you back to suffer that again It broke our hearts to lose you but you did not go alone for part of our hearts went with you The day God took you home
Bree is an amazing little girl. Breanna was an angel here on earth and now an angel in Heaven.
Our little Bree at 8 weeks old
TO CONTACT BREANNA AND FAMILY SEND AN EMAIL BY CLICKING ON THE PUMPKIN THANKYOU SO MUCH QUILT OF LOVE YOU ALL DID AN AMAZING JOB...Breanna's Memorial Quilt
View Breanna's QUILT OF LOVE
Breanna's smile quilt is ready for everyone to see
Here are a few of our favourite links for information on Krabbe disease just click on the picture!!!
Our little princess
"I would rather have had 30 seconds of wonderful, than a lifetime of nothing special." HERE ARE A FEW PICTURES OF BREE!!
NOW HERE ARE A FEW PICTURES OF SELENA AND SAMANTHA!!
HERE ARE A FEW OF NATE!!
*HUGS* TOTAL! give Breanna more *HUGS*
Get hugs of your own
please sign our guestbook and let us know you were here We love hereing from you.
Journal
Friday, January 2, 2009 9:14 PM CST Wow, it has been so long since we last made an update that i had forgot the password. ooppss... I see that there are since followers to Bree's site. I thought I would do an update. Our family is doing great. Samantha is now in highschool, she started a site on facebook called RIP BREANNA anyone is welcome to join. She is such a wonderful big sister. Selena is still doing wonderful in school with lots of friends. The girls dont talk much about Bree but I except that. We still have Bree in the same place. Our hope still is one day have her ashes put in a BUILD A BEAR. We were thinking an angel Bear. Nate is doing good. He is acheiving all his milestones. He is now just finally starting to talk. I guess when you have 3 other people who love you so much that all you have to do is grunt and point and all 3 come running it does not leave much time to talk. Well we had to stop some of that. He is now starting to say mommy and daddy instead of mumma and dadda. he says bye and hi. Oh and he can call our cat BEE now. The funny thing is he can say large words with no problem like Umbrela or lawnmower. Samantha is so good with him. I think when the girls saw that he was not sick that they could get closer they did.
Now we are back in January again. As many of you already know it is our nightmare month. Everything that could go wrong has gone wrong in January's. Jan 18, 2004, the doctors told us she has a major double infection in her lungs and that she probably would not make the weekend, Jan 16, 2004 Brees diagnoses, January 18, 2005 She passes away, I guess the best thing that ever happened in Jan was I found out I was pregnant jan 16 2002. We really miss her even after 4 years. when you have this most amazing gift from God and you see her look up at you smile at you then 2 and 1/2 years later she is gone it is hard. She was my life for years. She was so sick. i know now that Bree had to have her say in What baby we get next because when you look at Nate there is the sence of complete peace. He has so much of his sister in him.
Brian and I are also doing really good. I was listening to a talk show on the radio and they were talking about how hard losing a child is on a relationship it is so true. We got through it great because we both put our children's needs first before our own. I was focused soley on the girls and what helped was that Brian also did that. Not once did either of us say, "what about me" I think that is what helped. Now we have time set aside for us, but if we are needed we are both there. I could not imagine my life with him. The bad part of it all how could two people be so meant for eachother but yet have such sick babies together. I guess we just cannot have any more children. :0(. The risk is just too great. Nate is not affected with Krabbes but he does carry it. After Bree died there was just no way I could not have another baby, I was willing to take the risk that last time. krabbes could again haunt our family should Nate also have a child with a carrier. the girls had never been tested. They are both healthy but we do not know if they are carriers. As they get older and GET MARRIED and want to started families then they will at least have the choice to get tested.
Really, we are just the average family what would be the odds that we both carry the same defected gene. The doctor told me that everyone carries a few defected genes but the find someone with the same one. Now that is just crazy...
Enough of this babbling... everyone have a wonderful newyears and we wish all of you a healthy and prosperous newyear, may all you wishes and miracles come true. GOD BLESS
Hugs
Corinne, angel Bree's mom
Read Journal History
Hospital Information: HOME WHERE SHE BELONGS Woodstock, Ontario, Canada 54 Hincks Street
Links: http://www.krabbes.com krabbe kids http://www.krabbes.net Info on Krabbe disease http://www.huntershope.org info on Krabbe disease
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E-mail Author: barthun628@rogers.com
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