This is to help all the familes with no anwsers for there kids with disorders of the corpus callosum.
I can remember it like it was just last month i was 32 weeks pregnant and i was in the hospital for a week for pre contractions. i was getting ready to leave the hospital the day before my baby shower and i had gotten a ultra sound done before they would release me but what the dr said next would turn my world upside down. The dr came in to tell me there was a black spot on my sons brain but he was hopeful it was just the way the image was taken so he went me to a specialist just to get the ok. Longest 3 days waiting for the appointment and also trying to be happy at my baby shower when no one knew what was going on but a handful was also hard. My husband and i go to the dr appointment and they tell us "We are sorry , your son has a piece of his brain missing and it's un fixable" boy did we cry. They told us nothing was for sure he may live he may die on delivery he may never walk talk laugh may have cerebal pasley or be blind or not hear the list was endless but we had hope and family and friends. The next few weeks came with no ease as to what the out come will be but on May 2, 2010 my water broke and we drove 40 min to the hospital to make sure our precious Tyler was going to be born into the best care and hope for his life. Then the cut came and out came tyler his head was bigger then most and he was the most beautiful baby. Tyler was then kept in nicu for 10 days i split my monthers day with half the day in hospital with tyler and the other half with our oldest son Caleb. The dr's did all kinds of test and tyler was eating on his own and breathing on his own so they felt he could come home with us and we couldn't get out of there fast enough. Having our baby home was wonderful and we took everyday for what it was....a present! Soon after tyler went to all kinds of dr appts for his eyes, head, genetics, and neuroglist. He was 4 mnths before he had any medical issue and thats when he started having sezuiers :( With the help of his neuroglist we are able to keep them under control with medicine. Today he is 16 months old and does not sit on his own walk or crawl but he is the most happy loving funniest kids i know. Some people say they are sorry for us but i see gods gift to us and through him every one learn a thing or two. Tyler still amazes people everyday with his ability and don't focus so much on his disabilites. He also says bubba and that is his other brother who he just adores so much and we look forward to the day tyler can chase his brother around the house. This is also the only non profit organizationg for this disorder out there. Please support these kids and their familys, theres still so much unknown about what causes this to not grow and with your help we can help the familes cope better.
Join the Conversation
18032-C LEMON DR PMB STE 363
18032 C Lemon Dr YORBA LINDA, CA 92886
The NODCC is the only national organization serving people with a disorder of the corpus callosum (DCC) and their families.
for this Cause
Anyone can set up a fundraiser for this charity. It's quick. It's easy.
And it's free!