Our Dear Ryan Nicholas Patrick LIVED: November 28, 1996 ~ November 13, 2010.
Ryan's Brave March was a journey in LOVE, determination, & Thanksgiving.
Ryan was born Thanksgiving Day 1996.
He was our 3rd child. He was going to be "The Easy One" Twenty-one days later we rushed frantically to the ER with Ryan in a coma, near death from undiagnosed Insulin Dependent Diabetes. Ryan was 10 months old when he became the first baby to use an insulin pump regularly.
At 4 months old Ryan was diagnosed with extreme life-threatening food allergies to dairy, eggs, soy, nuts, legumes, wheat, grains, fish, corn, & apples. His Dr. wondered if he would become allergic to all things to which he was exposed. It seemed impossible to forge a future for him. Peanuts on one’s breath/a crumb of dairy accidentally ingested meant anaphylaxis.
At 3 yrs old Ryan was part of his Immunologist’s study conducted to isolate the gene causing Ryan’s medical problems: diabetes, food & environmental allergies, malabsorption. His disease was given a name: X-Linked Autoimmunity Allergic Disregulation Syndrome (XLAAD). It attacks males causing the immune system to "switch ON" but not "OFF". A history for XLAAD was compiled: no child survived into adulthood, most died as infants or toddlers. Ryan’s prognosis: Death! Only the fact that Ryan had already survived beyond where most boys died sustained our hopes that a treatment or cure would be found.
Over his 4th birthday Ryan’s digestive tract lost ability to absorb nutrition. He lost ¼ of his body weight in 3wks. Ryan was hospitalized with the usual “end stages" of XLAAD. Amazing teamwork, innovation by Ryan’s medical team, prayers and God's Grace kept him alive. Intense immune suppression meds and 24hr/day IV nutrition (TPN) sustained him. We didn’t know if Ryan would live let alone eat food again.
Ryan developed Adrenal Insufficiency from his immune suppression medications at age 5. He had life threatening Adrenal Attacks whenever active or excited. He required continual emergency life-saving interventions. It became clear his best chance to survive was a bone marrow transplant - before his immune suppression meds left his organs so broken they would fail him. How could our precious little guy be so sick? He seemed like any other little kid: he just had a ticking time bomb for an immune system.
At St. Louis Children’s Hospital on the first day of Spring 2004 Ryan received his bone marrow transplant: a renewed chance for life! He was 7 years old at the time. An anonymous donor from the other side of the planet supplied the bone marrow! Ryan is now fully engrafted. His XLAAD (also called IPEX) is "in remission".
For over 6 years Ryan struggled with complications from the transplant: chronic Graft Versus Host Disease (cGVHD). This disease attacked Ryan’s soft tissue. He could not straighten his joints, suffered with scleroderma, lived with eye pain, and lost his ability to walk. Ryan was challenged with reduced lung capacity/damage among many other medical issues. In November 2006 Ryan had a malignant lemon sized tumor removed from his back.
Ryan lived on dozens of daily immune suppression meds. He endured over 200 cycles of Extracoporeal Photopheresis and Occupational & Physical Therapies trying to rehabilitate his body.
Ryan’s life was a minute by minute struggle. It took God's help in the forms of: love, commitment, strength, faith, intelligence and endurance to survive each day. God continued to provide us with, constant help from devoted friends, church family, community, and an amazing team of medical professionals to maintain Ryan's life his body could endure!
Throughout all the medical obstacles Ryan stayed tough, intelligent and witty. His last few years were grueling. Battling cGVHD nearly drained his joy! His spirit grew in strength and we believe it grew too large for his Clay Body. He was “hit” with new medical issues and heavy challenges daily.
We prayed Ryan could have a chance to live his life to the fullest. We hoped he would know faith in God, love, strength, happiness and joy through all his trials.