I was nine when I was diagnosed with FH. My brother and I inherited it from our father. I told myself that I wouldn't let FH affect the way I live, even after seeing my brother have a quadruple bypass in his mid-30s and my father have a quadruple bypass in his mid-60s.
Everything changed in December 2014 when my daughter, whose total cholesterol was above 800, was diagnosed with homozygous FH, a more severe from of FH. Now FH affects everything in my life.
My daughter, at the age of six, has already begun showing signs of aortic stenosis. She is receptor null, so most medications on the market today can't help her. Those that can only have moderate effects. This past week my daughter underwent surgery to have a port installed in her chest. Apheresis treatments are scheduled to begin in two weeks and will potentially continue the rest of her life.
Growing up, I didn't let FH get in the way of the things I loved doing. It's much different when you have a beautiful little girl with a lump in her chest from a port. Her childhood life of ballet, gymnastics, and playing will be continuously interrupted with apheresis treatments. IT BREAKS MY HEART.
It has been challenging living a life of sadness on the inside, while putting on a happy face for your children. Having a community like the FH Foundation has helped with this burden. Being able to reach out to fellow parents and patients with similar experiences has been a blessing to my family. Members of the FH Foundation community provide support and encouragement when we need it the most. We are all in this together. They give us endless hope for a better future for our daughter. And as a father, that is all I want.