Welcome to Byrds for a Cure

Although we bring a positive attitude to life, knowing that our twins have a terminal type of Muscular Dystrophy known as Spinal Muscular Atrophy (SMA) type II is challenging on multiple levels. Like you probably, we did not know that SMA is the #1 genetic killer of young children. Half of children with SMA don't live long enough to see their 2nd birthday. We had no history of neuromuscular disease in our families and never knew that we were carriers for this genetic disease, until the twins failed to meet their developmental milestones beginning at around six months of age. 1 in 40 people are carriers for this disease, and you can request from your doctor a screening to determine your carrier status.

We are determined to fight this disease, and with your help we can find a cure. We are passionate about increasing awareness of SMA and funding cutting-edge, critical research in hopes of finding a treatment and a cure.

October 2008

Our Initial Message to Loved Ones

Yesterday, the pediatric neurologist confirmed that both twins do have Spinal Muscular Atrophy (SMA), type II.

SMA is genetic disease having to do with motor neurons. It causes muscle weakness in the entire body, particularly in the arms and legs. In the case of the twins, SMA explains why they can only sit up with assistance and cannot roll, crawl or walk now at age 16 months. SMA does not affect cognitive ability or intelligence, and there is no cure. If you're interested in more info, feel free to Google or follow this link: http://www.ninds.nih.gov/disorders/sma/sma.htm

Just to be clear, neither Cass nor I have signs of SMA ourselves. We are carriers for the gene, so any of our children individually have a 25% chance of having SMA. Jenna is healthy. But the twins both have it. The fact that they are twins is not relevant--genetically speaking, they are individual babies with non-identical genes. They individually had a 25% chance of having SMA, and coincidentally, they both do have it.

The babies are healthy otherwise, and are very happy. They eat well, are growing properly, are learning their first words and enjoy most of the same activities that other babies their age enjoy--playing with blocks, peekaboo, bopping their heads and clapping to music, watching The Wiggles, and eating chicken nuggets. They simply do these activities while they sit on the floor, propped with pillows. The Arizona Department of Developmental Disabilities has been working with us through the Early Intervention program, and the twins have enjoyed free, in-home physical therapy sessions each week for the last month or so. It was suggested when they turned one that we have them evaluated for EI's services, and we're so glad we did. We have some great therapists--physical and occupational--and the babies have so much fun during the sessions that they don't even know that they're "working"!

Recently, Congress has begun considering a bill which would provide much-needed funding to research potential cures for SMA. If you'd like to help us, please click on this link and use the information on pages 2-4 to send a quick form letter to your Representantives and Senators asking for them to support the Act. We would really appreciate it if anyone wanted to help us in this way. http://www.smafoundation.org/images/pdf/grassroots%20update%20july%202008.pdf

Thanks to you for your moral support and prayers. We don't have many answers beyond what I've written here, but hopefully over the next few months we'll get a better idea of what their futures will shape up as. We already know that they're gorgeous, smart, and charming, so really what else do they need?

--
The Byrd Family