From Amanda: Hayden Nolan Carver was born June 12th, 2011 weighing 7lbs 3ozs 18in long by C-section. He was perfect in every way. The only thing that he had was some mild jaundice and was able to go home 4 days later. We realized at a very young age that something wasn't right. Hayden's sister Kayleigh is only 14 months older so we knew things to look for. After months of seeing specialist and doing genetic testing, we found out that Hayden had a very rare disorder called 17q25.2q25.3 Duplication 17q25.3 Deletion. Only 20-25 people world-wide are known to have this disorder! The only things that are known about this disorder are that it can cause heart, brain, and kidney issues along with hypotonia, large head, and developmental delay. Hayden is affected in all these areas plus many others. We are currently being seen at MUSC Children’s Hospital with a total of 13 specialists and the possibility to see three more soon! He has had several hospitalizations and currently is admitted as I'm writing this. His longest stay was 27 days. The days are unpredictable and when we’re admitted we never know how long we'll be here. November 12th Hayden will finally get his second opinion from the specialist at Children’s Hospital Of Philadelphia. We've waited months to get in here and it can't come fast enough! Hayden's dad Jeff is the only one providing for our family at this time. I had to quit my job and school so I could take care of Hayden. He has therapy four times a week plus doctor appointments and that’s if were not in the hospital. We’ve come to the point where we are struggling to get by on our own and are asking that if you can help.
If you have any questions feel free to email me at email@example.com or message Hayden's page and I'll do my best to get back to you. P.s. my last name is now Carver : )
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