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Help Nic Volker 1 In A Billion Boy

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Nic will be 11 on October 26, 2015. He is the first person in the world to be saved by DNA sequencing. In his short life he has had 170 surgeries because of a disease that would cause wounds that wouldn't heal, lost his colon, had immune ablation, had a bone marrow transplant, contracted encephalitis, multiple bouts of sepsis, three cases of shingles, has had to go on methadone three times to wean off prescribed narcotics has had hundreds of other treatments a stem cell harvest in case he needs a second transplant and thousands of pokes and prods.

He has lived in the hospital over 800 days of his life and has had over 100 infections due to being immune compromised.  He  had to live much of his early life in the hospital and at home in isolation. Sadly he has missed most of his childhood due to illness and he struggles now living with the aftermath of the complications of his underlying diseases and the complications of treatment. He now has over 100 tonic and atonic (falls) seizures per day which are med resistant  and could lead to mental retardation, further cognitive and physical delays and or worse.  He has major growth and intestinal issues, along with a heart defect, ADHD, brain damage  and severe PTSD from complications of treatment, all he has endured over the years as a survivor  and will need future surgeries.  We are sorting out new information a possible new DX and treatment options. 

Despite all that Nic is full of zest for life. Even a small contribution would make a big difference for Nic as he by the Grace of God and modern science enters his 12th year of life. 


Organizer

Amylynne Santiago Volker
Organizer
Madison, WI

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