Help Daxton Stewart

On Friday, March 13, 2020, it seemed everyone’s world turned topsy turvy as the date most states and localities went into lockdown due to COVID 19. For Stefanie & Doug Stewart, their world was devastated by the worst news imaginable for any parent. Their youngest son, Daxton, was diagnosed with a terminal illness. Specifically, he was diagnosed with a very rare pediatric disorder called X-linked AdrenoLeukoDystrophy (X-ALD). This is a progressive disorder that eventually affects all parts of the brain causing total system failures, cognitive decline, paralysis, respiratory arrest, and vegetative state that can last months to years before death.

Daxton’s case is quite unique in that only one other person in the world has been documented to have this specific (MRI) pattern of ALD (Clinically, it is affecting his motor first, which is unusual.). What is even more unique is that Daxton is the only person in the world with ALD and Down Syndrome. Unique in the medical field is not always a good thing as it creates a lot of unknowns.

The only recognized and approved treatment for ALD is a Stem Cell Transplant. If it is successful it has a 75% chance of halting the disorder. Stefanie and Daxton have made frequent trips to Duke University Hospital in preparation for this, and the time has come to begin the transplant process. The Down Syndrome increases Daxton’s risk for catastrophic concern/death with the transplant to 30%. During the process Daxton and a parent (mom) will have to stay/be isolated in the Pediatric Transplant Unit for ~3months, then transferred to lodging just outside of the unit/hospital (still isolated) for another 3-4 months as he cannot be far away from the hospital for emergency reasons. If all goes well, he will then come home but is immunocompromised and unable to attend school for at least a year.

As you can imagine, the toll of medical bills, traveling, additional supplies for the stay/lodging, significant loss of income for 6-12 months +, and still having a household with 2 other children to support back home during this time period will be significant. We truly appreciate all prayers, well wishes, and any support you can offer.

Daxton is a vivacious little guy that struggles to find anything wrong with the world. At 5 years old his joys in life are his big brothers, mom and dad, Elmo, food, and throwing things as much as he can (not always in that order!). Though his Down Syndrome affects him cognitively, he seems to have a better outlook on life than most people do their entire lives and it is a marvel and a blessing to see him revel and find such joy in the simple things life has to offer.

It is an outlook that is celebrated by his family and everyone he meets! He can always find a reason to smile, and his God-given gift is to put a smile on the faces of those around him. He has fought through so much - Down Syndrome, congenital heart defects, congestive heart failure, open-heart surgery at 6 months old, physical/occupational/speech and feeding therapies, and Addison’s disease. All with that infectious smile. He’s fighting for his life now, but what a beautiful life to fight for.