43 years ago a group of parents gathered at John Hopkins University to support each other and talk about the MPS/ML diseases.* That same month of the same year a baby was born in Cleveland, Ohio carrying a gene mutation that causes Hunter Syndrome (MPS II) when passed to boys. That baby was me. If that's not a coincidence, I don't know what is. Eventually those parents would form what is known today as the National MPS Society known for a legacy of supporting families facing this incredibly difficult diagnosis.
Having a child at my parents age and time was hard enough, I couldn't imagine how having a child with a disease with a stark life expectancy and an expensive but shortened lifetime of medical costs would have changed everything. It could have changed the trajectory of their family, and their whole lives, but it didn't. Really they got lucky too, they dodged the genetic roulette. It lied in wait for me. Not only did it lie in wait, it waited to show up until I had my second son giving me a false sense of confidence that I could have healthy children.
So when you wish me "Happy Birthday", I am torn because due to my birthday this disease exists in my family. I am grateful for my life. I am grateful for my family and friends. I am grateful for my husband and my sons. I see life through a different lens than I used to; a more hopeful, humble, grateful perspective. Without living, there would be one less sister in the world, one less girl who almost always has a smile on her face, one less college graduate, one less hard worker, one less mother and wife, one less person who desires only to make a difference in the world, to "tell the world something". Perhaps if I wasn't here, Dan would have married an Australian Olympic volleyball player who actually comes close to matching his height that could have happened but instead he's happy to get things down for me I can't reach. I am torn because I feel that it's very unfortunate that I have passed this mutation along, and as a result it's made my children's lives harder. Don't leave this devastated or sad because I am not. I was also born to persevere and overcome. The best thing you can do is keep reading, keep talking about what we're doing, keep supporting us in so many ways! Why stop now, when we've made it through so much and we have so much more to do! I believe we can see a cure for this disease in my lifetime, after all I think I owe that in the very least to my children. I am saving my biggest smile for that day!
Thank you for the birthday wishes, and thank you for another year of really living. Happy Valentine's Day Eve for my name means "beloved by all".
*More can be found here about the history of the National MPS Society: http://mpssociety.org/about-us/history/