When we introduce our sweet Henry to new people they are immediately captivated by his joy and happiness that shines so incredibly bright. We tell new friends that Henry was born with a few unique needs that require extra love and patience each day. There is still a lot to uncover about Henry’s diagnosis, but what we know right now is that he has Hypotonia, low muscle tone, that has significantly impacted his fine and gross motor development. At 23 months Henry is able to cruise furniture and sit unsupported, however he still lacks the muscle strength necessary to walk or stand unsupported. Through an MRI in September 2019, we learned that Henry’s Myelination process within the brain is delayed/underdeveloped which has significantly impacted his emotional, cognitive and language development. To further understand Henry’s complexities, we have also sought answers through genetic testing which has shown us that Henry has a genetic abnormality on his GCP3 gene. It is undetermined whether this variation is of scientific significance at this time. While Henry has a handful of setbacks, he truly is nothing but pure joy, we cannot express that enough. Each day he continues to make progress but not without a lot of hard work, practice and intervention.
It was just 8 weeks after Henry was born that we noticed things did not feel right regarding his development. What began with struggles to support the weight of his head eventually lead us to observe additional delays. With each doctor visit we noticed the developmental gap growing wider and our list of concerns growing longer. Despite all our worries, stress and heartache, Henry’s spirit has never wavered. Henry is everything a parent hopes their child is; he is sweet, he is easy to please, he loves to eat and when he looks at you and smiles it’s as if that moment in time stands still for an extra second.
As parents you work tirelessly to give your child the best experiences you can offer. As Henry approaches his second birthday, one of the experiences I wish to provide for my son is the joy and thrill of riding a bike. Our family loves spending time outdoors, going on walks and being active. Because Henry is unable to walk on his own his only choice when we leave the house is to sit in the stroller. While sitting in a stroller Henry isn’t given the opportunity to engage his muscles, develop his coordination or strengthen his core, all of which are essential in learning to walking. We have seen how the AmTryke bike gives Henry a sense of independence, allow him to safely engage in our family’s outdoor activities as well as help him fine tune the skills needed to learn to walk independently. Henry works incredibly hard each day to learn to walk. Being able to use the AmTryke regularly will not only be a fun alternative for muscle development, but will give him a sense of normalcy as he learns to ride a bike along with peers his own age.
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