August is SMA awareness month!

What does it mean to be aware??????? Per Webster being aware is: having or showing realization, perception, or knowledge. While most people in our lives know that Noah has SMA, but how many REALLY know what SMA is??? I'd be willing to bet not many. With that being said in honor of SMA awareness month, I'd like to take a moment and educate you, so that you may educate others. When Noah was first diagnosed, Lane asked the doctor what to expect in regards to Noah's future...her response was he will live a normal shortened life and he will just be in a wheelchair. That statement was so far beyond reality...while we face an entirely different spectrum of normal, it is far beyond just being in a wheelchair. SMA is a degenerative neuromuscular disorder that causes the muscles in the body to atrophy and waste away. With that being said SMA affects the ability to walk, talk, sit, stand, eat, breathe, and swallow. Something as simple as a cough, Noah is unable to do on his own. Therefore we have a machine that does it for him. It is degenerative and progressive...meaning without a cure Noah will continue to lose strength...in SMA there is no "building" muscle like so many think. 1 in 35 people are unknowingly carriers of the SMA gene. 1 in 6,000 babies are born with SMA. There is no treatment, and there is no cure.  

"SMA is caused by a missing or abnormal (mutated) gene known as survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein in the body called survival motor neuron (SMN) protein. In a person with mutated genes, this protein is absent or significantly decreased, and causes severe problems for motor neurons. Motor neurons are nerve cells in the spinal cord which send out nerve fibers to muscles throughout the body. Since SMN protein is critical to the survival and health of motor neurons, nerve cells may shrink and eventually die without this protein, resulting in muscle weakness. As a child with SMA grows, it is difficult for his/her weakened muscles to keep up with the demands of daily activities. The resulting weakness can also lead to bone and spine changes that may cause breathing problems and further loss of function."

While most aren't aware of what exactly SMA is, know that it's much more than a little boy being in a wheelchair. 

August is SMA awareness month, but for us SMA awareness is each and every day. Awareness is when we wake up in the morning and unhook our little guy's pulse oximeter, bipap and feeding pump. Awareness is when we move him to where he wants to be 100+ times a day because he can't. Awareness is picking up the toy he's dropped for the 10th time in 5 minutes because of the tremors. Awareness is when he looks at you and say's "momma, my legs are broken" Awareness is when I pick him up and hold his frail body. Awareness is when he says he wants to walk. Awareness is when I hold his hand and feel the tremors as they shake his tiny hand. For us, it's everyday, every thing. We need a cure.....In honor of Noah and August...it's only one month.....Educate yourself and spread the word. We need you!

Awareness is key to a cure!!!