Scott, Ethan, and May Shannon
On May 12, we will be walking for our son Ethan.
Ethan presented with medical issues shortly after his birth, he had very weak muscles, breathing and swallowing issues. His medical team thought he had a congenital myopathy, we just didn’t have a confirmation of which one. We did many tests and didn’t get his official diagnosis of Nemaline Myopathy until he was about 1.5 years old.
Ethan has taught us a lot about looking beyond a diagnosis that is considered physically and/or life limiting. It does not define a person, and with the right supports, they can most definitely live beyond the challenges MD places on their lives.
Ethan may not be able to walk, but with life-saving equipment, like his trach & ventilator and with the help of his power chair, he has the chance to explore the world with some independence and participate in our community. He is bright, adventurous and does not let his disorder hold him back from the joys of life.
Coming from the perspective of parents caring for their child with a muscle disorder, living with a neuromuscular disease can be very difficult, with it’s fair share of moments of uncertainty, fear and sadness, but our son has taught us that hope and love will always overcome all of those worries. He has taught us so much and brings so much joy into our lives. We do not take a single day with him for granted.
We wanted to show our support for MD Canada because they have done so much for those living with muscle diseases over the years, they fund muscle disease research and have brought a lot of awareness to MD and the many other neuromuscular disorders that fall under the MD umbrella. We also have received support for our son to acquire much needed mobility equipment.
We were inspired to participate on our first walk after we stumbled across the Walk for MD event on a Facebook. Realizing it was very last minute, we quickly set up a fundraising team, gathered our family and friends and brought Ethan out to join in this special cause. It was very emotional for us to see others in the community out to support Ethan and others living with MD, especially seeing older kids living such productive, active and whole lives, which was inspiring for us as parents. It was a great opportunity to meet other families and raise awareness for NM as well.
The support MD Canada gives to individuals and families across the country is incredibly important to their quality of life. Research is important but MDC does more than that, they help people with neuromuscular diseases to live better - through supporting much needed medical equipment, to mobility supports and home adaptations so they can live with dignity and accessibility.
Read more about their story here.