Hi there! Welcome to our journey to gift our son, Archer, with a mobility service dog through 4 Paws for Ability.
For those of you who may not know, our son Archer was diagnosed at birth with a rare genetic neuromuscular disorder, Central Core Disease (CCD) as a result of a change on his RYR-1 gene (auto-recessive, though my husband Bobby and I had no idea this condition existed or that we were carriers). Affected children have diminished muscle tone (hypotonia) resulting in abnormal "floppiness" and muscle weakness, which impacts critical functions such as breathing and eating and simple tasks like sitting up, crawling, standing and walking.
The diagnosis was a complete surprise and left us reeling. We struggled to understand what this meant for our lives and how to navigate this new, complex world into which we'd been thrust. Accepting Archer’s diagnosis meant resetting expectations for our son and what the future might look like. Every parent has dreams and aspirations for how their child will thrive in the world and our visions were completely upended.
The hardest part was the lack of answers. When most people are handed news they weren’t expecting they go searching for answers; we were no exception. However, because CCD is so rare there were very few answers to be found and we were staring down a future with very little certainty. Would Archer walk? Talk? Eat? Having to consider that any of these possibilities were entirely feasible is more than any parent should have to bear.
Archer’s doctors told us children affected by CCD were on a spectrum; some were more seriously impacted than others, never ambulatory and requiring round-the-clock breathing support, while other children were only mildly affected. With Archer, all they could offer was that time would tell and we would just have to wait and see how things would turn out.
Early on, we made the decision to let go of all expectations and let Archer show us, day by day, what he was capable of. We'd love him and support him and he would forge his path his own way. Archer continues to surprise and delight us. At 18 months we were floored when he started to take steps, eventually learning to walk by his second birthday. He continues to make exceptional progress, learning new skills every day and gaining confidence in his own abilities. Our little dude is determined to be the best he can be and we are determined to help him every step of the way.
To continue to support Archer's progress, and most importantly foster independence, we're working to pair him with a special mobility service dog through 4 Paws for Ability. This dog would be a gift to our son. Not only would the dog be a physical support, particularly when he starts school, but also an emotional support to help him overcome challenges he is likely to face navigating life with a neuromuscular disorder.
If you are able, any donation is welcome and appreciated as it'll help us reach our goal of $17,000. If you're unable to donate, we just ask that instead you do something kind for someone else and think about our guy Archie. This journey has been nothing short of miraculous and with your help we will be able to continue to foster growth and love for Archer.