Family of amputees
My name is Amy Dolphin. I am a below knee amputee. I have three children, and two of my children are also amputees. We have what is classified as “congenital absence of the tibia”. My grandfather suffered from this genetic defect. My mother was the youngest of twelve children and none of them had the missing tibia bone. However, the gene was passed to me.
Growing up, my parents never treated me differently than my sisters. I was fortunate to come from upper middle class parents. We skied every winter since I was 5 years old and I used two skis until I was 23. I took a ski trip with my sister, Kara to Park City, Utah where they had a disabled ski program, so I decided to give outriggers a try. It was a wonderful experience! I skied with outriggers on one ski from that point forward.
I also started riding horses when I was about ten. My mom bought me lessons. I was nervous, but determined to be a good equestrian. I knew my leg was shaking when I was trotting. I tried to control it, but it scared some of the horses. I picked up the phone one day and heard my Mom talking to the trainer. The trainer said I could not ride because of my prosthesis. My mom replied “Well you can just go to hell then! I’ll take my daughter somewhere else!” She never let me feel sorry for myself. We moved on to a wonderful barn whose owners worked with me to become a successful rider. I never went too far with it, but I owned a horse throughout high school and had fun.
After I met and married my husband, we went to a geneticist to see what the chances would be for our child to have the congenital defect. He said we had a 50% chance the child would carry the gene and a 25% chance the child would be born with the missing tibia. We had two sons. My oldest, Patrick, was born without his tibia. Robby came along 19 months later with no defect.
Patrick has had several issues with his stump. Last year he had a knee disarticulation surgery which amputated his stump and he is now an above the knee amputee. His new leg cost $12,000 out of pocket. At this point in my life, I had been divorced for four years and my ex-husband had passed away of a heart attack in February of 2015. I had to rebuild my life after our divorce, which meant finding a job after 11 years raising my kids. Needless to say, I did not have money for Patrick’s new prosthesis. I reached out to our friends, family and community for support. I started a GoFundMe page, which raised the money for his leg and was amazed at the response.
Backing up to 2009, I had gotten pregnant with my daughter, Molly. She was also born without her tibia. Molly’s father and I never married and are not close, so I have 3 children as a single mother. I live month to month, but we make it work. The boys receive their father’s social security until they’re 18 which helps tremendously. Jason’s family has stepped in to help us in every way they can. My brother-in-law, Josh, and his wife Michele have been absolutely wonderful to us. They have three kids of their own to support.
I was able to find a job with the Commonwealth of Pennsylvania as a Fiscal Monitoring Analyst. I have good benefits, but the durable medical equipment company they use only pays 50% of Medicare coverage! I just set up a payment plan for a much-needed prosthetic liner. They told me I could not pick it up until I paid for the old liner, which after a few months, had two giant holes in it. After patching it with old liners for another six months, I managed to pay $300 towards the $1200 out of pocket cost and they gave me the new liner. This kind of issue is a constant in my life.
Luckily, my daughter has been going to Shriners since birth, so I don’t have to pay for her prosthetic needs.