Liam was born on July 19th, 2014 weighing a whopping 8lbs 14oz 21.5 inches long. Looked seemingly healthy and passed all the newborn tests and was good to go home at 3 days old, minus slight jaundice. We had his levels checked at 4 days old. July 25th, 2014 at just 5 days old, I got a call that would change my life forever.
My sweet Liam was diagnosed with SCID- severe combined immune deficiency. A rare and incurable auto immune deficiency. I had to go home, pack our bags, and drive 3 hours to Ann & Robert H. Lurie Children’s Hospital of Chicago, thinking we’d be there for a couple of days, but it ended up being 9 months.
During those 9 months Liam was prepped for a bone marrow transplant. There’s no cure for scid but the bone marrow transplant can set you up for a full healthy life. Liam’s prep was lumbar punctures, imaging, central line placements (single and a double,) chemotherapy, steroids, and much more.
Liam was gtube fed shortly after his transplant that he received on September 26th, 2014 at just two months old. He’s had over 500 blood and platelet transfusions between then and now. Liam has come so far. He’s had a lot of major surgeries and has a lot of major health issues post chemotherapy and transplant.
8 years later, Liam is still on several medications, is gtube fed and is in the hospital weekly for IVIG (immunoglobulin) transfusions/infusions to help his immune system as it’s still showing signs of suppression.
Dragonfly has been absolutely amazing and has welcomed us with the most open of arms- they’ve been there when we had last minute unplanned emergencies, when we needed an ear to listen and a friend to lean on, had gift cards and coffee when I was desperate for a break.
We choose The Dragonfly Foundation over and over again. They’ve given Liam opportunities like seeing his favorite football team play in games, meet the teams, and much much more!
SCID and this treatment plan and all he’s endured has been a lot on Liam. His mental health took a turn about 5 years in and he has had suicidal thoughts. It’s been heartbreaking. Liam is so amazing and strong and knows that one day we will see the light at the end of this journey.
Liam is ready to be a “normal “ healthy kid. He’s ready to be free from so many things he’s had to deal with since 5 days old.
