In the beginning of October, Dave, Kate and I flew out to LA to attend the Myotonic Dystrophy Family Conference. We were excited, yet nervous, about being confronted with the disease so directly, but know we definently made the right decision to attend. We met many wonderful families, got "best practices" from experienced parents and learned all about the latest research from the experts.
One of the biggest things that we walked away with was the fact that there is no "road map" that tells us where Kate is headed or what to expect. We know that she will continue to see specialists for eyes, heart, digestion, orthopedic, neurology and genetics as well as physical, speech and occupational therapists. We still don't have DNA-tested answers for our family genetic situation, but we aren't rushing into this area since I and Charlie are symptomless.
One of the most exciting parts of the conference for me was getting to meet Lisa Vittek, the Director of the Myotonic Dystrophy Foundation (MDF) and mother of Kayla, a 4 year old girl who also has CMMD (Congenital Myotonic Muscular Dystrophy). The day that Kate was diagnosed, Lisa found my announcement post on this blog and left a comment for me, reaching out her hand in support. When I discovered it later that night, I cried and closed my computer. At the time, I just wasn't ready, but a few days later, I realized that this diagnosis wasn't going away and I needed to learn everything I could to help my daughter make progress and stay healthy. It was so nice to finally meet her and her family at the conference and spend some time talking. I even got a hug from Kayla the night before we returned home. We also met a sweet little girl, Raina, and her family. Raina had the same start that Kate has had and is now 7 years old. She is walking, talking and has the most adorable face. I've posted some pictures of the families we met.
Even though this was a "medical trip," Dave and I really enjoyed our time. Kate is such a laid-back baby, we even took her on a tour of Hollywood. It was fun to see the stars' homes and visit all the iconic sights. Charlie had an awesome time with Glamma, Uncle Luke, Aunt Karen, Cousin Grace, Aunt Jenny, Uncle Tommy and Cousin Josh....thanks for making his time away from us so special and fun!
If you are looking for more information about this disease or how you can help, check out www.myotonic.com, the website for the Myotonic Dystrophy Foundation. Dave and I are talking with MDF about how we can be involved. Check back soon for our plans!