Jason Watts wrote -
Why am I running this marathon?
I'm running to remind myself of the pain and discomfort my daughter goes through for four hours every two weeks (about the time it will take me to run the marathon).
I'm running to remember that caring for her illness is a marathon, not a sprint, as keeping her alive will be a lifelong journey.
I'm running to raise awareness for Familial Hypercholesterolemia (FH), which affects 1:217 people, but is undiagnosed in 90% of those affected by the illness and to support the FH Foundation and its efforts in this fight.
Two years ago, my now eight year old daughter, Avery, was diagnosed with a rare disease called Homozygous Familial Hypercholesterolemia (HoFH), a rare form of Familial Hypercholesterolemia (FH). Avery was born without the ability to process cholesterol, which causes her cholesterol level to be around 800. Due to this illness, she already shows the beginnings of heart disease, and with her unique genetic makeup (even rarer than most other HoFH patients), there are currently few medications that can treat her and none that can cure her.
To keep the heart disease from worsening, every two weeks we take her to Nemours/Alfred I. duPont Children's Hospital in Wilmington, DE to have the cholesterol manually removed by a procedure called LDL apheresis. Unless a cure is found, she will have to have these treatments for the rest of her life, and without apheresis, Avery would likely have her first heart attack or stroke within 5-10 years.
Since her diagnosis, my wife and I have become patient advocates for the FH Foundation. As advocates, we have attended medical conferences and lobbied Congress to try and raise awareness for the disease and increase funding for cure research. This October, I will run the Marine Corps Marathon to help raise funds for the FH Foundation (www.thefhfoundation.org) and raise awareness for HoFH and FH.
I hope to raise $5,000 in support of the FH Foundation. Any donation you can provide is greatly appreciated (and is tax deductible). Additionally, there is a donor, who will match dollar for dollar, all donations the Foundation raises in the coming months (up to $25,000), so every dollar you donate will raise two dollars for the Foundation.I appreciate any support you can provide.
Here's an article the Frederick News Post did on Avery last year:
and also a piece we recently did with Fox News in Philadelphia, which has begun to air nationally:
You can also “Like” Avery’s page on Facebook to keep updated on this new chapter in our life: www.facebook.com/FightingForAvery