Medical Doctors & Practices for SMA Patients in Atlanta, GA
Skylar Marie Jones was born November 19th, 2009 and was diagnosed with SMA (Spinal Muscular Atrophy) at the beginning of 2010. Even though the earlier SMA is found, the more severe it is, we felt that we were blessed with an early diagnosis because we were able to start treatment sooner. If you're anything like me, I had no idea what SMA was when I first heard about it. When I googled "SMA" I was horrified that such a disease could even exist. It's a recessive genetic disease where both parents have to be carriers and there are different severities, but all are degenerative and affect all voluntary muscles. One in four people are carriers - most unknowingly. This disease does not discriminate and anyone could have it.
Type 1, the type of SMA Skylar had, is the more severe form. According to statistics, 90 percent of babies with type 1 don't make it to their second birthday. Unfortunately, Skylar is one of those statistics. All voluntary muscles are affected and just get worse over time - swallowing and breathing are the two main voluntary functions affected that typically lead to death. It's supposedly the genetic disease closest to a cure, so we're hoping for the sake of others, that happens soon. The more awareness we can bring to this disease, the better chances we have of fundraising, and more money will go to research. If you want to learn more, check out the SMA resource links to the left.
Skylar had some great physicians and we are extremely thankful for all of the doctors and nurses who have helped us throughout our journey. If you are a parent, family member, or friend of someone with SMA and want to learn more or find good doctors, I want to provide a list to help you in case you've stumbled upon this website. There are some great organizations dedicated to SMA, but due to the rarity of this neuromuscular disease, I learned that information is hard to find... especially when searching for doctors. I hope this page helps people in need find information on SMA and doctors in Atlanta, Georgia.
To the left, you will find links to some helpful websites about organizations, clinical trials, raising money and awareness, and helping newly diagnosed families with SMA (Spinal Muscular Atrophy). Also, there is a list of medical practices we have used thus far and have found extremely helpful. It's difficult to find care for your child with SMA because there is not an SMA specialist. Since it's a rare disorder, you have to see multiple specialists for different bodily functions and some doctors have never dealt with SMA before. We've been really grateful for our doctors and hope they are able to help others with SMA too.