Melaina Grace Cunningham loves Elmo. She likes to sing along to her Elmo DVD's. These days she is starting to roll over and has great neck control. These are the milestones my family celebrates. Some parents may be talking about walking, we are thrilled with sitting up.
Melaina has a disease called Nemaline Rod Myopathy. It causes muscle weakness and is very rare. It is one of the forty neuromuscular diseases the Muscular Dystrophy Association is trying to cure.
Our routine is probably a lot different than most.
We have been fortunate to work with some great therapists who help Melaina in a variety of ways. We get this through another great program, First steps, an early intervention program in Missouri.
Every week, we have physical therapy, occupational therapy, speech therapy. We have some great nurses. All of whom help Melaina continue to improve. She loves water therapy. Twice a month we hit the pool. Melaina also spends time in her stander, a device to help her bones grow properly since she spends a lot of time laying down.
We are fortunate. Melaina has a lot more movement than a lot of kids with Nemaline Myopathy. But as Melaina gets older, we will require more and more help from MDA.
Lori Dobbs of MDA says more than seventy percent of the millions of dollars raised every year goes to research and the research is paying off. She says the FDA recently approved a treatment for one of the 40 MDA diseases, Pompey's Disease. So, finally a cure for the children and adults with it. Research is expensive. Every minute of research costs $65 but I wonder, could the next minute be when a breakthrough in Nemaline Myopathy is found?
That money also funds a very special place called MDA summer camp. MDA kids can go here and be with other kids just like them. 12-year-old Mariah Schott will be going to camp for the first time this summer. Mariah has a disease called Charcot-Marie-Tooth Disease, a neurological disorder that causes damage to the peripheral nerves, which carry signals from the brain and spinal cord to muscles.
Like my family, Mariah's mom remembers how lost she felt after a normal pregnancy they found out Mariah was going to be different. Sometimes, Mariah gets made fun of at school but at camp, she is just another kid in a wheelchair. Another twelve year old with a great smile who just wants to have fun.
Melaina will make us more involved with MDA. She is doing well and we can feel very lucky because these diseases can be such thieves, stealing movement, stealing time, stealing memories. But I can speak for my family when I say we would do it all again, the hospitals, the tears, the emotional roller coaster to enjoy the gift that is my little Melaina.
Thanks to all of you who have sent thoughtful emails and cards. My family appreciates your thoughts and prayers. If you would like to help MDA, the annual Stride and Ride is coming up June 23rd at Cape County Park.