Welcome to Byrds for a Cure

Although we bring a positive attitude to life, we do struggle with the fact that our twins have been diagnosed with a terminal disease known as Spinal Muscular Atrophy (SMA), type II.

Like you probably, we did not know that SMA is the #1 genetic killer of young children!  One of the many things we hate about Spinal Muscular Atrophy is that it's so overwhelming, even for the families of kids who are affected less severely than others.

However, we are determined to fight this disease; and with your help, we can find a cure.

Yes, we are passionate about increasing awareness of SMA, funding research for SMA, and joining the fight against SMA. We urge you to get involved and help end this degenerative killer of young children.

SMA research is active, mature, and has had dramatic breakthroughs in the last 15 years. The National Institutes of Health (NIH) has indicated that SMA is the "closest to treatment" of more than 600 neurological disorders.  According to the NIH:

"Spinal Muscular Atrophy was chosen because of the severity of the disease, its relatively high incidence, and the fact that the gene has been identified and the gene product is known, resulting in leads on possible treatments. There is a gap in funding to advance research on SMA, but if progress can be made, it would have implications for other diseases."

So, join the fight!!!     We could use someone like you!

When we found out ...

Our Initial Message to Loved Ones - October 28, 2008

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