Back in January I asked for prayer for my 10 month old nephew, Isaiah, who had just been airlifted to a children's hospital in Spokane after being diagnosed with severe anemia and kidney failure. After a over 5 weeks in and out of the hospital undergoing various treatments and tests, he was diagnosed with a rare auto-immune disorder called Atypical Hemolytic Uremic Syndrome.
This summer I interviewed my sister-in-law about how this experience has impacted her, including her hopes and thoughts about the future.
While he was in the hospital, Isaiah began a series of treatments with a trial drug called Soliris. His improvement was astounding. He was on 24-hour dialysis and was fully sedated when he was admitted into Sacred Heart Children's Hospital and, after only a few treatments his kidneys had regained full function and showed no signs of damage. It's not an exaggeration to say that this drug saved his life.
But the drug was still under trial and not approved by the FDA for Isaiah's disorder. Until it was approved, the drug would not be covered by insurance. Because Isaiah's disorder is genetic, and likely permanent, health coverage is essential.
My brother found out on Friday afternoon that the FDA has approved Soliris for treatment of patients (including infants) with AHUS! I can't tell you how exciting this is for my family and all of the people who have been praying for Isaiah for the past 9 months.
My brother, Riley, wrote this on Friday night and I would like to share it with you. Thank you for your prayers, and please...
"Celebrate with Me"
This is my son, Isaiah. In October of last year, my wife and I noticed dark urine in his diaper. Tests revealed that his kidneys were spilling blood. Our doctor assured us that this is usually due to immature ureter development, a somewhat common disorder that most children grow out of. The bleeding stopped for a few months, but it came back again in February. Our doctor was concerned and took blood and urine samples for more thorough analysis. That night, our son became pale and lethargic, so we took him to urgen care. Quick tests revealed that his red and white blood cell levels were dangerously low. Our doctor rushed in at 4 am and ordered him to be airlifted to a more advanced medical center, Sacred Heart Children's Hospital in Spokane.
After two blood transfusions. Isaiah's counts were still dropping and his kidneys began to fail. He was placed on dialysis and sedated while the doctors studied his symptoms. He showed all the signs of Hemolytic-uremic syndrom (HUS), a disorder usually caused by serious infection (e.g. E. coli). There was no fever and test after test revealed no infection to speak of. Further tests eliminated rarer causes of HUS such as HIV and Lupus (it's never Lupus).Read more here