Christian Billingsley is a 17 year old young man who has battled Atypical HUS and resultant complications and kidney failure starting when he was 3 months old.
Atypical Hemolytic Uremic Syndrome is an ultra-rare, life-threatening, chronic, genetic disease that progressively damages vital organs, leading to stroke, heart attack, kidney failure and death. Despite historical supportive care, more than half of all patients with aHUS die, require kidney dialysis or have permanent kidney damage within 1 year of diagnosis.
Christian lost all kidney function when he was 1 year old and was placed on dialysis until a transplant at 2. Six months later the transplanted kidney was attacked again by aHUS and failed. Christian returned to daily peritoneal dialysis treatments for the next eight years administered in his home by his parents.
In 2005, evacuating for Hurricane Katrina, Christian experienced major complications that sent him to hospital admits in Jackson, MS, Memphis, TN and New Orleans, LA for 6 months. He survived, and his care was transferred to new therapies and doctors at Texas Children's Hospital in Houston, TX.
In all, Christian's journey has taken him through 5 different Children's Hospitals in 5 different states. He has endured more than 20 surgeries and more than 1,000 days of hospitalization.
Doctors have given him little chance of survival 5 times. He has battled back to health every time.
Today, through the incredible hemodialysis equipment manufactured by NxStage Medical, Christian receives 4 hour dialysis treatments, six days a week, administered in the home by his parents, who have been clinically trained to access and administer hemodialysis therapy.
Breakthroughs in the genetic causes of Atypical HUS discovered at the Molecular Otolaryngology Research Laboratory at the University of Iowa, coupled with the discovery of Soliris by Alexion Pharmaceuticals, a newly released therapy drug which demonstrated incredible off-label success in treating Atypical HUS, have given hope that Christian can once again receive a kidney transplant and recapture growth, development and organ and bone repair potentially to the point of near-normal health.
Christian's Conquest was formed to serve three very important purposes:
1) To raise funds for Christian's therapy treatments, hospitalizations and expenses, which are and will continue to be significant,
2) To raise awareness of Atypical HUS and offer patient support and advocacy for those dealing with this terrible disease,
3) To support children and support groups that exist to serve children battling lifelong, chronic disease.
Thank you for visiting. Please feel free to read all throughout the site and do not hesitate to contact us directly if you need to talk about your child or yourself while struggling with chronic disease. My wife and I review email daily and can email or call you within a few hours of your contact to us. Please, do not hesitate to contact.
Hope and Love,