This family….is amazing. I absolutely loved meeting them and getting to spend time with them. We played in the creek, caught lightning bugs in the shadows, took a stroll, and had some cuddle time with lots of laughs (well, I didn’t get to cuddle..but that’s okay 😉 ). Seeing families just be themselves is amazing to me – watching how they interact, how they love each other, how they fit together like a little puzzle.
This family is particularly incredible because of what they go through every day. This beautiful big 6 year old girl has SMA. I asked Mom, Jessica, to tell us about SMA in their family: “Our daughter, Kadence, 6 years old, was born with a genetic disease called Spinal Muscular Atrophy (SMA). SMA effects 1 in every 6,000 births and is the number one genetic killer of babies under 2. You have heard the saying a couple’s “two peas in a pod,” and it turns out we literally are. When you think about that the odds of two parents both passing on SMA to their children are astronomical.
This disease is purely physical, it is brutal and has no treatment or a cure. Kadence is one of the mildest forms but even then this disease and will compromise her organs and slowly take away her muscle mass to a point that she will be in a wheel chair in the near future.
Despite all of these hardships we have instilled in our family to Never Give Up. Everyone has differences and we would like to raise awareness to society to embrace one another’s differences and accept people for who they are even with limitations.
Here is a link that better explains it. http://www.curesma.org/sma/about-sma/types-of-sma/”
SMA is a horrible disease. But they don’t let that define Kadence or define their life. They’re fighters. August is SMA Awareness Month. This blog post is perfectly timed for me to try to do a tiny bit to bring more awareness to this disease; something I had heard very little about until I met the Hastings. I’m now a proud owner of a “Never Give Up” shirt of my own and hope I can help, in just a small way, to try to find a cure for this. Because when I look at Kadence’s smiling face, with her energy, passion, and humor, I know it just has to be done. Please join me in supporting this cause by embracing the fighters like Kadence and remembering the fighters like Gwendolyn Strong – http://thegsf.org/