Pamela VanScoy's Page
In case you have never heard of Alpha-1, I wanted to let you know how this condition has affected our lives. Way back in 1984, our second son, Joey was born. He seemed healthy at first but when he was about 1 month old, he developed jaundice. We were quickly sent to Children's Hosital in DC. After many tests, Joey was diagnosed with Alpha-1 Antitrypsin Deficiency. Our reaction was, "Alpha What'? We had never heard of Alpha-1 but we quickly learned that it is the most common genetic cause of liver transplants in infants. It also can affect the lungs and liver of young adults. Joey did well until he was 8 years old and he was listed for a liver transplant. We waited almost 2 years and finally got the miraculous call on November 20, 1994. He had a few setbacks the first year but since then has had great health. We are very proud of him for all he has accomplished despite a difficult beginning!
But, back to alpha-1: After Joey's transplant, I thought we were done with Alpha-1. (A liver transplant basically cures you of the condition.) However, when our last child (Zac) was born in 1998, he was diagnosed with Alpha-1. Even though I knew the odds (Ken and I both carry the gene), I had convinced myself that "it" wouldn't happen again. Needless to say, I was depressed about the diagnosis and went on the internet to see if there had been any new research.I guess I was looking for hope, too. I was shocked to find the Alpha-1 Association, which focuses on education and support and the Alpha-1 Foundation , which focuses on research. I got involved with the Association and attended their National Conference. I have met some amazing people there and they truly are my heroes! I became a peer guide because I didn't want anyone to feel as alone as I did in 1984. I found out about all the research being done by the Alpha-1 Foundation and decided to do something to help. I hope you will consider making a donation. Every little bit helps and my hope is to one day find a cure for Alpha-1!
Thank you for visiting my Personal Fundraising Page. Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to our fundraising efforts. Many thanks for your support-- and don't forget to forward this to anyone who you think might want to donate too!
Please help to find a cure for Alpha-1!