Family of Florida boy born with partially formed skull creates foundation in his name

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The family of a little boy in Florida who was born with a partially formed skull has created a foundation to honor their son and raise money for research of the incurable condition that threatens his life.

Jaxon Buell, of Orlando, Fla., was born Aug. 27, 2014, and was diagnosed at birth with microhydranencephaly, a developmental abnormality  marked by incomplete brain and skull formation. According to the National Institutes of Health (NIH), scientists don’t know what causes the condition nor have they found a cure.

The Buells have said they faced criticism for not aborting their son, but today, 20-month-old Jaxon has defied the odds to celebrate many of the milestones typical of a boy his age. As he has grown, Jaxon’s family has updated supporters on their Facebook page Jaxon Strong.

“His growth and progress continues, against incredible odds, and he has one amazing story,” the Buells wrote in a Facebook status update on April 29. “He deserves the best life anyone could ever give him, and we celebrate his life every single day.”

Brandon Buell, Jaxon’s father, told in December that the family had donated “thousands of dollars” to nonprofits that help children like Jaxon after their GoFundMe page reached its $35,000 goal when Jaxon was 6 months old.

“We keep waiting for it to kind of disappear and Jaxon be a 'flavor of the week'— but [the media attention] is not going away,” Brandon Buell said at the time. “It is surreal, it’s humbling, overwhelming and odd to be about our family and our son, but he certainly deserves it.”

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According to the family’s Facebook page, the Jaxon Strong Foundation will aim to raise awareness of and funds for neurological research, and advocate for individuals like Jaxon who are living with disabilities.

“We will be giving these funds to medical and supporting organizations directly related to the Foundation's areas of focus,” the family wrote on Facebook on April 27. “We are very excited to see Jaxon's life and story continue to benefit others, now through his own Foundation.”