SCID Warrior

e call from Sick Children’s Hospital in Toronto that Isaiah had tested positive for a rare disease they had tested for following birth. We were told that another test would be done, praying that there was a strong possibility that this first test could be a false positive. Within days, our family received the heartbreaking news that Isaiah indeed suffered from a very rare disease called Severe Combined Immunodeficiency. The most devastating news of all was that without treatment, babies with SCID do not usually survive past the age of two years. At 3 weeks old Isaiah was placed in isolation at Sick Kids Hospital where he required oxygen and ongoing care. Our family dedicated all our energy to Isaiah for the month that he stayed in isolation, praying for him every day. Isaiah endured a multitude of tests and specialists that no newborn should have to endure. But Isaiah rallied, and he eventually started to gain weight and breathe on his own without oxygen. He began a weekly injection of Adagen which he continues to this day. The type of SCID that Isaiah suffers from, ADA (Adenosine Deaminase) is rare. Isaiah, and other babies with SCID (ADA), lack the ADA enzyme found in healthy people that breaks down Deoxydenosine and Adenosine in the body. The absence of ADA results in a build-up of these metabolites which are toxic to the immune system. This leaves babies like Isaiah unprotected and susceptible to repeated and relentless infections that they cannot fight against. The most famous example of this disease is David Vetter, who was placed in a bubble upon his birth and became known as the “bubble boy”. We have been overloaded and overwhelmed with medical information and decisions. A sibling bone marrow match had been our first hope as a sibling match has a higher success rate but our daughter Jace was not a match. As Isaiah’s form of SCID comes with a metabolic condition and immune deficiency, we believe that the risks are far greater with a donor bone marrow transplant. Our last option, Gene Therapy, is not currently offered in Canada. The only places currently providing Gene Therapy are in the United States, England and Italy, all of which comes with an exorbitant cost that would overwhelm any family. After much prayers, we’ve made the difficult decision to proceed with Gene Therapy. Despite the overwhelming cost, we have decided that this is best possible course of action to allow Isaiah to live. This spring, we will take Isaiah to California to be treated with Gene Therapy at UCLA. The last child at Sick Kids Hospital with ADA type SCID is now eight years old thanks to Gene Therapy. We continue to live in isolation at home, which means no visitors, no friends and no outside world for Isaiah. The only place he can go is to his weekly appointment at Sick Kids Hospital in Toronto where he continues his care. Since he has returned home he has not caught one infection and that is a miracle itself. This entire experience has been challenging for our family but we know that the Lord is keeping him healthy “He himself bore our sins” in his body on the cross, so that we might die to sins and live for righteousness; “by his wounds you have been healed" 1 Peter 2:24. "I will give you back your health and heal your wounds,” says the Lord." Jeremiah 30:17

P.S. Isaiah was the first baby screened at birth for SCID in Canada-he was picked up during a pilot test, one month before the official launch of SCID Newborn Screening that started on August 12, 2013. Ontario is the only province in Canada that screens for SCID. SCID can be cured or better managed through a bone marrow transplant and other treatments if it is detected early and before a patient falls ill. Routinely, diagnosis is made after a baby becomes ill, and for these precious babies even the common cold can be deadly.