I will never forget that moment in 2017, when I got the call. I was in the middle of Nora's swim class when the doctor told me that Colin has severe hemophilia A. My stomach fell through the floor and my mind raced. I struggled to keep my cool as I packed up my kids, loaded them in the car, and began to panic google.
Hemophilia is a rare, life-long, inherited bleeding disorder without a cure. Without treatment, people with severe hemophilia have spontaneous bleeds, bleed longer from injury, can have a permanent disability from bleeding into joints, and even die.
Suddenly my sturdy-looking 17-month-old appeared painfully fragile. The couple years that followed were hard. Colin was quickly diagnosed with an inhibitor, which meant that his body rejected the life-saving medications. I found myself on constant high alert. Every stumble (and everyone knows how many stumbles a two-year-old takes) sent my heart to my mouth.
Four years, 11 emergency department visits, two surgeries, three inpatient admissions, and hundreds of infusions later we are in a much better place. With the help of our amazing team at Boston Children’s Hospital, Colin’s body now accepts his medication. Every morning Jordan and I insert a needle into his port, a medical device implanted in his chest, and give him the meds he needs to live an almost normal life. The kids are so good about it. Colin and Nora simply turn on the TV and let us do our thing. Once his port is numb, we can complete the procedure in 20 mins. When pushed, Jordan can do it in 10. But I’m too anxious to speed through like that—one mistake and he could end up with a devastating port infection. At five years old, Colin’s tumbles are far more infrequent and tend to be more serious—like when he fell down the entire flight of stairs or put his tooth through his cheek. When these events happen, we now have an app so we can estimate his medication levels and help us assess whether an injury should be okay or whether we need to get to the ER ASAP.
I feel like we have settled in pretty well to this life and I attribute much of this adjustment to our involvement with the New England Hemophilia Association (NEHA). Throughout everything, NEHA has been a constant source of strength and support. The programs and the community have and will continue to help me navigate what Colin’s condition means for him and our family. For example, next summer we will go to NEHA's Family Camp where Colin will begin the process of learning to start an IV in his arm so he can give himself his own medication. NEHA also gives us hope for a future without hemophilia.
Science has already made incredible advances in the treatment of hemophilia. In 1960, the average lifespan for someone with hemophilia was 10 years. Today, Colin is expected to live just as long as all the other boys in his new kindergarten class. I truly believe that in Colin's lifetime, with your generosity, there will be a cure for hemophilia. Until then, I am so grateful for anything you can give to support the tremendous programs and services that NEHA offers our family and so many like ours.
Last year, we didn't do very much fundraising because the pandemic was at the fore and there was so much pain, suffering, and loss related to Covid. We weren't really comfortable asking for your help. But small non-profit organizations like NEHA depend on donations from people like you, who care about our community. So this year, we are asking again for you to please consider making a contribution of any amount to our walk team. Even the smallest donations help and let us know that you have heard our story and you care about Colin's future. Thank you in advance for your consideration.