Jennifer, Errict & Alex need our help.
This is the story of Jennifer Lavery and her two sons, Errict and Alexander. Errict is 13 years old and Alex is 9. The family lives in a modest bungalow in the west end of Hamilton. Alex attends Earl Kitchener Junior Public School and Errict attends at Ryerson Middle School. Jennifer works full-time as an accounts payable coordinator and commutes to Burlington each day for work. They are no different than many Canadian families with one exception: in 2005, Errict and Alex were diagnosed with Duchenne Muscular Dystrophy.
Alex is a gregarious youngster while Errict is quieter and more introspective. At school they rely on the help of classmates, support staff and assistive devices. Alex has a full time educational assistant and his classmates fight over who will help him with the physical challenges he faces on a day to day basis. Errict uses a laptop computer and a wheelchair to assist him at school. Alex usually relies on a walker but recently he broke his ankle and has had to use a wheelchair. Outside of school, both enjoy hanging out with friends, playing video games, and going swimming. Errict and Alex also rely on their Occupational Therapist, to help them navigate their home, school and community.
One of the challenges that Jennifer now faces is adapting Errict and Alex’s home environment to their needs. In the fall of this year, Errict will begin to go to high school. Like many kids, he will be taking the bus to and from school, albeit, a bus specially equipped to meet his mobility needs. And, because his mom works full time, like so many kids his age, he looks forward to coming home and being able to let himself into his home independently. However, in order for this to happen, Jennifer will need to ensure that there is a lift or ramp that he can operate by himself to allow him access to the house. As their mobility declines, Errict and Alex will also require more assistance navigating throughout their home, getting from their bedrooms to the bathroom, enabling them to utilize the kitchen, etc. The costs of such a retrofit are daunting. Even with grants from charitable organization, the family will be left to cover costs in excess of $60,000. Just to get an architectural plan will cost Jennifer $1500.
Another challenge for Jennifer will be to continue to support Errict and Alex’s ongoing therapy and involvement in their community. Like any family, they enjoy spending time going to visit family and friends, hanging out at the park, swimming and going to movies. Unlike most families, however, they have many appointments with therapists and medical professionals related to DMD. There are regular appointments at the McMaster Children’s Hospital, Neurometabolic & Neuromuscular Clinic and both boys attend physiotherapy at the Children’s Developmental Rehabilitation Program. As the disease progresses and Errict and Alex’s disability worsens, the need for a specially equipped van that will accommodate two wheelchairs becomes essential. Again, even with the assistance of grants, the purchase cost of such a van will exceed $40,000.