Hey all!

August is here! Another new month, which means new adventures and new goals–YAY! A few years ago, August was just another month. But, now, August is a special month. It has a bigger meaning. It’s a month to spread awareness for a disease near and dear to my heart–SMA.

Many of you that know me, know what SMA stands for. But, I’m sure many of you have never heard the acronym before. I’ll be honest, I had never heard of it, nor did I know the meaning, until two years ago.

My nephew, Graham, was diagnosed with SMA (Spinal Muscular Atrophy) Type I shortly after his birth. SMA is a genetic disease that is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a critical protein that is essential for the function of nerves that control our muscles. Without this protein, the nerves aren’t able to function properly and eventually die. This leads to debilitating and often fatal muscle weakness.
Individuals with SMA have difficulty performing daily life functions. Functions that most of us so easily take for granted (i.e. breathing, swallowing, and walking). However, it does not affect their mental capability. The brain is not affected and most with SMA have above average intelligence. Their bodies may not be perfect, but their minds definitely are, and Graham is living proof!
Over the past two (and a bit) years, my family has been through gut wrenching heartbreak, sadness, and cried countless tears. However, we’ve also been through tears of joy, happiness, and celebrated monumental milestones with Graham! It brings me so much joy to see the progress he has made, and continues to make.

Most of this progress can be attributed to Spinraza, or as Ade says, his “muscle juice”. 🙂

Because of growing awareness and clinical research, I’m confident that SMA has met it’s match. Graham had the opportunity of participating in a clinical research trial for Spinraza (nusinersen), and it has been life changing! It has made it possible for individuals with SMA to reach milestones that otherwise would’ve been referred to as a miracle.
Graham has taught me so many things at such a young age. Who knew a two year old could impact you so much? He has taught me to never take anything for granted (especially the gift of good health), family first, and to not sweat the small stuff.
My brother and sister-in-law are amazing humans, super-humans if you will. The love and care for their family is beyond measure. They seriously go above & beyond and then some! They have set an amazing example for everyone around them. I truly aspire to be half as good of a parent that they are someday.
I thank God everyday for my sweet nephew, Graham, and the impact he has had on our lives.
Today, we CELEBRATE. Today, we spread awareness. Today and everyday we cherish the gift of life.
I love you sweet, G.
NEVER GIVE UP.

Head over to Prayers for Graham and hit LIKE to follow G’s journey & keep updated  🙂