I really don't understand how time passes so quickly. But anyway.
Yesterday I took So for his
every other week play day at the
Patricks house. See I met Ryan because he was a patient of mine who has a very rare disorder and has survived much longer than
any other person with his disorder... there is a copy of his profile from his
careingbridge site.
Ryan our 3rd child was born Thanksgiving Day 1996. 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 4
th birthday Ryan’s digestive tract lost ability to absorb nutrition. He lost ¼ of his body weight in 3
wks. 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 is "in remission".
NOW Ryan struggles with complications from the transplant: chronic Graft Versus Host Disease (
cGVHD). This disease attacks Ryan’s soft tissue. He cannot straighten his joints, contends with
scleroderma, is limited by eye pain, and has lost his ability to walk, is being challenged with reduced lung capacity and damage among many medical issue. In November Ryan had a malignant lemon sized tumor removed from his back.
Ryan is currently on immune suppression
meds, doing
Extracoporeal Photopheresis bi-weekly, and Occupational & Physical Therapies weekly to try to rehabilitate his body.
Ryan’s life is a minute by minute struggle. It takes God's help in the forms of: love, commitment, strength, faith, intelligence and endurance to survive each day. God continues to provide us with, constant help from devoted friends, church family, community, and an amazing team of medical professionals to maintain Ryan's life each day!
Throughout all the medical obstacles Ryan has always stayed tough, intelligent and witty ... until this year. Battling
cGVHD has nearly drained his joy! He is making progress and we have seen his spirit grow in strength again. But he is “hit” with new medical issues and heavy challenges daily. We see Ryan’s mood improving and mobility getting better. We
fervently hope to see him genuinely happy again.
We pray that Ryan gets a chance to live his life to the fullest and that he knows faith in God, love, strength, purpose, happiness and joy through all his trials.
I realize that it sounds so horrible... but at this point
Ryan is doing much better. and
although he still struggles he is a great kid full of spit and
vinegar.... and a smart ass to boot.
Well my dog has a great time playing over
at their house. and
Ryan enjoys being a paid dog sitter... I pay him $4.00 per visit... it was a
negotiated price. I said 5 and he said 3 so we met in the middle. It is always fun to here the funny things So and Ryan's dog fritzy do together. He and Edgar plan to go fishing come spring.... we had planned top go this fall but Ryan eneded up in the hospital with a line infection... but none the less Ryan still calls Edgar his fishing buddy. I didn't mean to make the post all about Ryan but he has a heartwarming story and I really do enjoy spending time with his fam... well I better go get busy... ttfn (ta ta for now) from tigger.
