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Our Kids - Meet Ethan

In 2002, Ethan's older sister, Brooklyn, passed away at five months old due to a rare immunodeficiency disorder, Severe Combined Immunodeficiency Syndrome (SCIDS). Doctors told the family that any future children they would have could potentially have a 25 per cent chance of being born with SCIDS. Sadly, Ethan fell into the affected percentile. Nothing was more upsetting than hearing that another baby in their family, their precious baby boy, had tested positive for SCIDS a few minutes after birth.

Ethan

Ethan, SCIDS

When a baby is born, his or her immune system is supposed to protect the body from harmful germs. Sometimes, however, babies are born with immune deficiencies and as a result, they lack the ability to fight routine infections on their own. Unfortunately, this was the case with Ethan.

Soon after birth, Ethan was diagnosed with SCIDS. This is a rare disorder where the body has little or no immune system necessary to stave off infection. With the lack of specialized white blood cells (B- and T-lymphocytes), which defend the body from infection, patients are susceptible to recurring infections or even death.

A reverse isolation room at The Hospital for Sick Children soon became Ethan's home as he spent the first eight months of his life with virtually no contact with the outside world. It was important to isolate him because any infection, no matter how minor, could have been fatal. A bone marrow transplant would eventually be the only solution that could give him a fighting chance at life. After waiting for more than five months to find a donor, Ethan's doctors found a suitable match.

During the eight months that Ethan spent at SickKids, his parents longed for nothing more than to kiss him, hold him and have that connection through skin-to-skin touch. Both Ethan's doctors and his parents were determined to spend Christmas 2005 with Ethan at home with his two other siblings. Because of the groundbreaking research and knowledge at SickKids about SCIDS, Ethan was able to experience the magic of the holidays at home - where he belonged. At that point, his sisters only knew him as their baby brother behind the glass and Christmas would be the best chance to get to know him. Finally, his family was able to catch up on all the missed hugs and kisses from the past eight months. Currently, Ethan comes back once a month to visit his first home for check-ups and to visit old friends.

While Ethan was busy playing with his siblings and new friends, his parents recently shared their story of courage and belief in SickKids with Standard Radio listeners at the 21st Annual SickKids Radiothon.

“SickKids means the world to us, they gave us our son. We love it here. It was hard to be here for eight months but it has definitely become our home away from home.” - Lori, Ethan's mom

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