I will be running the 2024 Boston Marathon as part of the Miles for Miracles team to help the brave kids at Boston Children's Hospital.
When I was a child, the doctors at Boston Children’s treated me and saved my life. Today they are treating the son of a dear friend. His name is Cam Robinson.
Cam suffers from homozygous familial hypercholesterolemia (HoFH), a rare-threatening genetic condition that causes accelerated atherosclerotic cardiovascular disease and puts him at risk of a fatal cardiac event. He was diagnosed at age 5 when a diligent dermatologist identified cholesterol xanthomas on his body. A cardiologist ran his cholesterol levels and at the time his LDL was 897 (well above the healthy target of 120). A subsequent cardiac catheterization revealed Cam had a 90% blockage in his right coronary artery. He needed immediate treatment. At that time, the only options to prevent his atherosclerosis from getting worse were either a 6hr weekly treatment called LDL apheresis or a liver transplant. Cam had a port placed in his chest at age 5 and has endured close to 250 treatments to date. The care he has received from Dr. Sarah deFerranti, Dr. Jake Hartz and the entire cardiac team at Boston Children's Hospital has been life changing for their family. Without them, Cam would not be where he is today.
Like Cam, I was brought to Children's as a sick child. At age 18 months, I contracted an acute form of anemia called transient erthyroblastopenia of childhood (TEC) which can be fatal given the benign symptoms. An astute on-call pediatrician sent me to our local hospital for a blood transfusion but I was discharged early the next day by another doctor. Fearing I was still unwell, my mother took me to Children's for a second opinion. There Dr. Allen Goorin quickly identified the TEC and had me admitted. I was given more blood transfusions and made a full recovery, but had I not been treated as quickly as I was, I would not have survived. I was a classic example of why Children's is the best hospital to take your children in their time of need.
Cam is another amazing example. Thanks to the doctors and nurses, Cam is not just surviving, he is thriving. Sarah, Jake and team are always finding ways to provide Cam with the best treatment while balancing the need for his childhood to remain as normal as possible. Not only have they dedicated themselves to executing the current treatment plan, but they are also on the leading edge of the latest breakthrough research which helps bring us one step closer to finding a cure for HoFH.
I am here because of Children's. I am running the marathon for Children's because of Cam. The level of strength, courage and grace that he shows us every day, and in the face of such adversity, is well beyond his eleven years. It is an honor to know him. It will be a privilege to run for him.
Please support my fundraising and help the incredible kids at Boston Children's Hospital.