Dear Ryan McMann Supporters,
My son Ryan just turned 18 yrs. Old in July, 2013. He is a senior at Waterford Kettering High School. He also attends Oakland Technical Campus in Clarkston, and works at Little Caesars in Waterford. He would like to attend Kettering University in Flint, and become a Mechanical Engineer.
Ryan has had many medical setbacks. In March, 2000 at 4 yrs. Old, he was diagnosed with Stage II Burkitt Lymphoma. He had a tumor removed in his descending colon, and was treated with Chemotherapy. During his Chemo Treatment, his bowels stopped working on two separate occasions, and his doctors could do nothing to help him, and they didn’t know if he would survive. Thankfully, because of God’s Grace, he did survive, and has been cancer free for the past 13 years. However, almost every day, Ryan would be congested, always have a cough, feel tired, no matter how much sleep he had, and feel achy. There were numerous times he would be so ill, he could not get out of bed for days. For 11 years I took him to numerous doctors, and urgent cares. He would seem to improve with antibiotics, but as soon as it was finished, the symptoms would come back.
No one could ever find what was causing all his symptoms. Little did I know that other family members were also having similar situations.
In October, 2011 at a family wedding, a flyer was handed out to promote a fundraiser for two of my female cousin’s boys. The Three boys had a Genetic disease called, XLP, (X-Linked Lympoliferative Disease.) Another female cousin asked if I was positive that Ryan didn’t have XLP. I asked what the symptoms were, and she named everything that Ryan had been suffering from. That night I googled to see if there was a link between Burkitt Lymphoma and XLP, and more than 50 sites appeared. I was devastated!
Within a few weeks we had Ryan tested, and he came up positive for XLP. Only males can get it, and females are carriers. The disease occurs when the X-Chromosome is mutated, causing the male to have a compromised immune system. This means that the male does not produce enough anti-bodies to fight against cancers, viruses, and other illnesses he may be exposed to. My father has XLP, and I am a carrier. Many of my female cousins’ sons have XLP, with a total of 10 in our family, and possibly more. This genetic disease is so rare, that there have only been 91 cases in the last 30 years. U of M Mott Children’s Hospital in Ann Arbor, was already researching XLP, before our family started treatment there. The only cure is a bone marrow transplant. Three male cousins have successfully had transplants, and Ryan’s transplant is tentively scheduled for August, 2014. He has multiple matches on the bone marrow registry list. Until transplant, Ryan receives IVIG’s, every 8 weeks. This is where immunoglobulin is added to his blood, to boost his immune system, and help him fight against illnesses he may be exposed to.
Ryan will graduate in June, 2014, and will start soon after to prepare for transplant.
Thank you for your support!