The Ambassadors are a person or family who are committed to making the Walk for Muscular Dystrophy a success, and have gone above and beyond to promote and raise awareness of the Walk for Muscular Dystrophy in their community.
Meet Nevan and Ella!
Nevan, 6 and Ella,3 both have a rare form of Muscular Dystrophy classified as Merosin Deficient. Their struggle with this disease became apparent in the early months of their lives. While most children were meeting the exciting milestones of rolling, sitting, standing and taking their first steps, our children were still struggling to hold their heads up. Today, they can neither walk nor stand independently and their mobility is greatly restricted. Some of the potential realities of this disease are the use of feeding tubes, reliance on devices that assist breathing, insertion of spinal rods due to scoliosis and development of severe joint contractures .
Intense physiotherapy, stretching, massage, and assistance with all aspects of movement are all part of every day for Nevan and Ella. Muscle ability and therapeutic benefit are factored into the choice of every recreational activity they participate in. Despite these challenges, Nevan and Ella are happy, bright children who love life. Currently, Nevan is involved in therapeutic horseback riding, and both he and Ella participate in assisted swimming. Nevan has completed grade one and both he and his sister are learning to play the piano. Nevan is smart, creative, has a wonderful imagination and a kind heart. Ella is incredibly animated, funny, and already shows a sweet sense of empathy and compassion. As parents, we feel incredibly blessed everyday and are inspired by our children’s courage and undaunted spirit. They have brought a profound meaning to our lives and constantly remind us of the precious nature of life.
We dream of a future for Nevan and Ella that is bright with opportunity. Muscular Dystrophy Canada allows us this hope through the many roles that it plays. Muscular Dystrophy Canada is dedicated to research seeking ways to improve life quality and duration . It offers a community where Nevan and Ella can see and feel that they are not so different. And Muscular Dystrophy Canada’s generous equipment program helps to provide relief from the heavy financial burden of wheelchairs and other mobility devices that need to be updated regularly as children grow. Nevan and Ella have both benefitted from such equipment that has not only given them a great sense of mobility, but fosters their independence and allows them to play in simple games that they would otherwise only be spectators of.
On behalf of our family, we extend our deepest gratitude for supporting Muscular Dystrophy and in turn providing hope for children like Nevan and Ella.
-Jeremy, Kira, Nevan and Ella Dixon