In 2016, Vanessa Brown's life was "turned upside down".
Her two boys Riley and Tarek were diagnosed with Duchenne Muscular Dystrophy (DMD). DMD, the most common form of muscular dystrophy seen in children, is a progressive muscle disease, predominantly seen in boys, that effects all muscles in the body starting with the hips and upper thigh. There is currently no cure for DMD and those effected generally don't live beyond their mid 20's.
Boys who have the rare disease (it effects approximately 1:3500 newborn boys and can either be inherited or cause by a random genetic mutation) like eight-year-old Riley and four-year-old Tarek generally lose their ability to walk and are restricted to a wheelchair before their teens. Weakness then progress to other areas including the muscles used for breathing and the heart.
"When the boys were diagnosed, our world was turned upside down. Everything we thought our future would be no longer was and we have since been adjusting to a new normal full of grief, stress and anxiety," Mrs Brown said.
"We have spent so much time seeing various specialists and therapists as we try to manage the ongoing decline of our boys health. As a result, I haven't returned to my regular work as a teacher putting our family under extreme financial stress.
"Now that Riley is almost nine his strength is deteriorating further and he is relying more on using his power wheelchair for mobility. Currently, he uses a power wheelchair that we have loaned from the children's hospital until he is able to get his own. However, as we have no way of transporting the wheelchair, it currently remains at school which means he has to walk to and from the car each day to get to where his wheelchair is charging."
This is causing concern. It hasn't been uncommon for Riley's legs to give way and resulting in a fall. Mrs Brown "dreads the day" that one of the falls results in a broken leg taking away his ability to walk sooner, rather than later.
It's the reason why they have started a GoFundMe campaign to raise $50,000 to purchase a wheelchair accessible vehicle. While they receive funding to purchase the power wheelchairs (which generally incur the same cost as a new car), they receive no assistance to buy a vehicle to transport them, only the modifications that can only be done on a practically new vehicle that will cost near $70,000. So far they have raised $11,000, but they are still a long way from their goal.
"With both boys eventually needing to rely on powered mobility we also need to consider a vehicle large enough that will be able to transport them both in their power wheelchairs so we are very restricted with what vehicle we are able to purchase," Mrs Brown said.
"Originally our plan was to hold fundraising events to help us raise the money but sadly with the restrictions recently placed on events this is no longer possible.
"This horrible disease has already taken so much away from our family but we do our best to keep going every day and try to help the boys enjoy their lives as much as possible. This vehicle will play an integral part in helping them remain active members of their community as well as travel to and from school and their many appointments."
On Wednesday, Fairfield mayor Frank Carbone presented the family with $1000 from the mayoral scholarship fund to help towards the purchase of the vehicle.
- To help in the purchase of a wheelchair accessible vehicle, donate to Vanessa's GoFundMe page: gofundme.com/f/riley-and-tareks-accessible-vehicle.