My son Aidan is a 12 year old with an unrelenting spirit. He leaves an impression on everyone he meets, never runs out of things to talk about, and his tell-tale laugh will let you know he's coming before he rolls into the room. This guy has places to go and people to see, but getting there has become a challenge. Duchenne Muscular Dystrophy is day-by-day robbing him of his freedom. Simple tasks, like climbing into the car, are now a painful, drawn-out, dreaded ordeal for him.
Duchenne (DMD) is a genetic, progressive, muscle-wasting disease, occurring in about 1 in every 3,500 boys. It strikes equally across the world, in every country, race and culture and about 30% of those diagnosed have no family history of the disease. Boys with Duchenne typically lose their ability to walk between the ages of 10 and 12, followed by the loss of arm function in their teens, and later on, failure of the heart and lungs. Duchenne is ultimately fatal in every case, with few individuals surviving into their 30's.
The most difficult part of being a parent to a child with DMD, is to watch his abilities slip away. One father described it as cradling a child made of sand. We can't stop DMD, at least not yet, but we will do everything that we can, for as long as we can, to give our children the best lives they can live. As these abilities slip away, one by one, we mourn and at the same time we search for ways to adapt.
Balancing care, career, finances, and education is a juggling act for every family. For a family affected by Duchenne, it can feel like bowling balls are being tossed into the act, followed by boulders. This past year has been a particularly difficult time for our family. Aidan has reached an age of major transition, where he is requiring more involved care to function throughout the day, more equipment and more accommodations. In addition to adapting to the stress that comes with these changes, both financial and emotional, we were hit with the shock of my own diagnosis of bilateral breast cancer this past March. In April, as I recovered at home from a double mastectomy, our house was severely damaged by a record-breaking hailstorm. A large portion of the ceiling collapsed as softball sized hail came straight through the roof. The repairs were extensive, and took months to complete. These events have left us struggling to fulfill our promise to Aidan. Safe, comfortable and reliable transportation is vital for quality of life, but special needs accessible vehicles are very expensive. The need to purchase this type of vehicle at this time in our lives has felt like a boulder being tossed into the juggling act... and all we could do was duck.
...But then the Jett Foundation opened the Jett Giving Fund. If we are able to raise 50% of the funds needed to purchase an accessible van for Aidan, the Jett Giving Fund will match the remaining 50% and purchase the van!
This van would immediately improve Aidan's mobility, allowing him to smoothly and painlessly enter the vehicle. He will no longer have to choose between exerting the strength needed to transfer into the car or just staying home. As he makes the transition to his new power chair in the coming months, the van will be essential to transport the chair.
Thank you, from the bottom of this mother's heart, for reading our story and considering making a donation toward our cause. If you would like to learn more about Duchenne Muscular Dystrophy, please visit jettfoundation.org or check out the age appropriate short video by Brain Pop attached to the right.
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support our fundraising efforts.
If other resources have already been used to meet a specific need, if there is no longer a specific need, and/or if donations have been received in excess of a specific need, donations made in furtherance of a specific need will be applied for general purposes of the Jett Giving Fund. If the Jett Giving Fund no longer exists, all donations will be applied to further the general charitable mission of the Jett Foundation.