New Wheels for Nile

https://www.youtube.com/shorts/-hVqm2fd0AY

Please allow us to introduce our 5-year-old son Nile!!! First, a bit of his story...

Nile was born with a debilitating genetic disorder called SMA (Spinal Muscular Atrophy). It is a genetic neuromuscular disorder that affects the nerve cells that control voluntary muscles (motor neurons). Babies with SMA2 can sit without support; however, most cannot stand or walk independently. Feeding and breathing problems may also develop. SMA2 is caused by changes (pathogenic variants also called genetic changes) in the SMN1 gene and is inherited in an autosomal recessive manner.. So basically, SMA causes muscles to slowly waste and nerve endings to die.

When we received the diagnosis, we had two main reactions. 1: unconditional love for Nile in the exact way he came to us 2: determination to give him the best quality of life possible. God had already prepared our hearts for this diagnosis, and we were down to ride every wave. Unexpectedly, in what can only be described as a miraculous intervention, a friend advocated for our son to be a part of a clinical trial in the US. In this trial, the missing gene (synthetic) was injected into his spine, preventing further muscle deterioration and potentially the strengthening and promotion of muscle development.

Nile is a "whirlwind" of movement and activity in his day-to-day life. His upper body strength has increased remarkably as he wheels himself independently - doing "catwalks" in the mall and freewheeling at the skate park! We celebrate every accomplishment and are in awe of Nile's motivation to try new things and push himself to do hard things with his body. Being such an adventurous kid, our goal is to raise the significant funds required to purchase a multi-use, versatile, go-anywhere wheelchair. This would allow him to go over rougher terrain on our family hikes, navigate sand at the beach, and even participate with his classmates through the snow! This particular chair build allows us to personally choose back supports, wheels, colour schemes etc to create the most wonderful and custom-made fit for our Nile bear. If I (his adoring mom) could have drawn out my dream chair for Nile and his needs, this particular chair has it all and more.

We don't just want to help Nile get from point A to point B. We want to help him become as engaged in his life and world as possible. We want him to be proud of his wheels as an extension of his body, to look forward to zipping around with the power element and to actually go out of his way to play tag/interact with kids his age.

This chair promises a majorly improved life for Nile. It is one thing to have a big clunky, heavy wheelchair that can get you around and another entirely to ENJOY movement! We want what is best for Nile and would greatly appreciate whatever help we could get to reach this new goal. We're grateful to live in a country where we can find support and a community that loves our little guy so well. (Oh yeah, our BIG, HANDSOME guy as Nile often reminds me ;) )

(All donations would go towards Nile's chair build, potentially travelling to the states to pick it up/costly shipping. Anything extra would go towards other supports, special equipment, or extra costs that come with a special needs life)

(Another huge thanks to those who have supported Nile and our family financially/otherwise already, he is where he is today because of your help <3 )