New Story 10/24:
HELLO JT,GOD BLESS YOU.
First Story:
Six years ago, when I was five months pregnant with my son, Jordan, I found out he had a genetic disease called Hunter Syndrome (MPS II). This disease is awful. There is no cure, no medically accepted treatment, and it is 100% fatal. Children with Hunter Syndrome typically suffer their entire lives until they die at around age twelve. My husband and I chose to have our son because we are morally opposed to abortion. Jordan underwent an unrelated umbilical cord blood transplant when he was six weeks old. The doctors didn't know if it would work or not because he was the first child to ever have the treatment for his disease. Unfortunately, my son had many complications, including severe Graff vs. Host disease, and he lost his fight one month and three days before his second birthday.
My husband and I desperately want another child, but we have a 50/50 chance of having another boy with Hunter Syndrome, and we have a 50/50 chance of having a girl, who is a carrier of the disease and will pass it on to her children. My husband and I decided that the risk is too high to have another child naturally. However, we can have another healthy child through in-vitro fertilization with pre-implantation genetic testing. The doctors would test the embryos for the disorder before implantation. This would be the safest way for us to have another child.
For the past three years, I have been battling my insurance company to pay for all or part of the procedure, but the insurance company refuses to look at the situation as medically necessary. They insist that they do not cover infertility. Although I have explained, in detail, my unique situation and the fact that I could easily have another child on my own, the insurance company is willing to let me risk having another unhealthy child. It is unfathomable to me that anyone would be willing to risk (50/50) paying over a million dollars in medical bills (which is what my son's medical bills were in less than two years) instead of putting forth $15,000 - $20,000 to prevent it.
My husband and I do not have fertility issues. I got pregnant very easily with my son. However, we feel it would be irresponsible to get pregnant naturally, knowing the risk.
We would love to pay for the procedure ourselves, but when our son was sick, I quit working for the two years he was being treated. We racked up tons of debt, and ended up in bankruptcy. Although we both have good jobs now and can pay our bills and living expenses, we don't have the extra money to pay for in-vitro. We've thought about taking out a loan, but with bad credit and a tight budget, it's just not an option at this point. I am thirty (thirty-one in November), and I feel as if the clock is ticking. It is hard to live with the fact that I may never have a healthy child, simply because my insurance company refuses to show any compassion.
This is a wonderful endeavor that you are taking on, and I hope that the A.R.T. Project can be successful in raising awareness and funds! GOOD LUCK!