HYDROTHERAPY FOR GRAY

Hello. My name is Barbara and I am fundraising for a very special kind of hero, my grandson Gray.

Gray is five years old and lives in the Yukon with his mom (my daughter, Hannah), his dad Chance, and their dog Masie.

Gray was born with Spinal Muscular Atrophy (SMA), a progressive neurodegenerative disease that affects the motor nerve cells in the spinal cord and impacts all voluntary muscles, including those used for activities such as breathing, eating, crawling, and walking (similar to the more well-known ALS or Muscular Dystrophy). Gray navigates his world using a wheelchair and walker, wearing special orthotics and braces, taking some steps, and working tirelessly to nurture and strengthen his body. A life with SMA involves a lot of work – appointments with occupational therapists, physiotherapists, neurologists, orthopedic surgeons, radiologists, social workers, orthotists, pediatricians, SLP’s… it is a big job for a little boy. What SMA does not hinder is his cognitive ability or joyful spirit and Gray loves music, stories, magnets, baking, forts, and water!

Being a kid, Gray takes his SMA in his stride. An anecdote I love is when recently he and his family were visiting with some friends who had a 5-year-old daughter. This little girl proceeded to walk across the lawn where they were all sitting and Gray, of course, could not keep up. She said to him, “Don’t be so lazy!” to which Gray responded without missing a beat, “I’m not lazy, I have SMA.”

I’ve never lived inside the disabled reality before. I have never experienced what it is to be essentially invisible in a world catering to the able bodied, where access to basic needs is not available. What I am learning from being around Gray and Hannah is what it means to move around every day in a world that is not set up for kids like Gray, a world of curbs and stairs and stares and uneven ground. I am awed by their resilience, their courage, their seemingly endless patience…not to mention their humour.

As Gray looks forward to kindergarten in September, Hannah is navigating the system through this major transition, employing new therapists, ensuring an accessible educational experience, and acquiring new equipment such as an electric wheelchair (in the range of $60,000) or scooter to allow Gray to keep up with his peers, gain independence, and remain included in day-to-day kid activities. It is an on-going path of expense and advocacy to love and support a child with a profound neuromuscular condition, and Hannah works very hard to get Gray everything possible to maximize his day-to-day experiences and his long-term health and additional goals.

Another costly therapeutic aid, one that is very helpful for Gray's strength and agility, is a hot tub for hydrotherapy. Hydrotherapy is extremely beneficial for children with SMA. Warm water provides buoyant support, increased mobility and muscle-building resistance where the demands of gravity are reduced. For SMA, spending time in water is the number one physiotherapy recommendation.

Fundraising for a hot tub feels a little strange since it sounds like a luxury – and in a way it is. Another way of looking at it is that Gray’s family is working hard and nonstop to hire and manage specialists, navigate a complex medical system, modify their home for accessibility, buy and maintain medical equipment and mobility aids, and travel to B.C. a minimum of three times per year to get Gray the disease modifying treatment (Spinraza) that allows Gray to maintain the function he has - all this in the context of on-going advocacy in a world that is not built for a person with special needs. They do not have the bandwidth or resources to get this “extra” that, after medication, is the single thing that will help Gray’s body maintain and even gain function with regular use. Yes, there is a public pool in Whitehorse, but the logistics of taking time out of two busy jobs and Gray’s school and appointments to get there regularly when it is open and accessible create ongoing barriers that ultimately result in less time in the water. Purchasing a hot tub is simply not financially realistic for Gray's family to buy on their own. With hydrotherapy at home Gray would be able to access water and its benefits on a daily basis, when it works for his schedule and energy level – and boy does he LOVE water!

The kind of hot tub that is suitable for a place like the Yukon must be heavily insulated to be able to handle the severe winter cold. This makes it more expensive to buy. The cost of an Arctic Spa model that would be most suitable for Gray sells in the range of $25,000.

As she makes her way along this road with Gray, Hannah awes and inspires me. With her steadfast determination to ensure that the world is accessible for Gray, with her strength and perseverance in navigating an often impenetrable and challenging system in order to get what is needed for Gray at all levels, it is her boundless love for Gray that propels her through this reality every minute of every day.

I am so proud of her – and I want to help in any way I can. That is why I have chosen to launch this fundraising campaign through Go Fund Me. What Gray particularly needs at this point in his development is a hot tub, for all the many reasons explained above. They are expensive. And so I am reaching out to everyone I know, hoping this appeal will be shared with as many people as possible to make this hot tub a reality!

Whatever you are able to donate and however far you can cast this appeal will be so greatly appreciated!

Thank you…

Barbara