My DMD Hero
Duchenne muscular dystrophy (DMD) affects 1 in 3,500 people. So to have 2 kids diagnosed with DMD is extremely rare. Chris Andrews and his wife, Trisha’s oldest son, Brock, was diagnosed with DMD at the age of 3. They received the diagnosis from a voicemail their doctor left for them. This was a horrible way to find out this devastating news. For the first year to a year and a half, the family just put their heads in the sand and tried to work through it alone. Chris is a pastor at a church, and at one of their events, he met a man who was visiting. He asked if there was anything the man wanted Chris to pray for. The gentleman told him that his son was diagnosed with DMD, and there was an instant bond. This also introduced Chris and his family to the first DMD community event.
Chris and his family attended the Duchenne Dash, a 5K race put on by the Little Hercules Foundation. Seeing all of the children affected by DMD in wheelchairs, unable to walk or run in the race was heartbreaking for the Andrews family. Two years after the Duchenne Dash, their youngest son, Graham, was diagnosed with DMD, and they knew they were being called to help others and make an impact. So, Chris and Trisha started planning on a whiteboard how they could help others battling this horrible disease. Along the way, the Andrews met Blake and Ryan. When they asked what they could do to help the DMD community, Blake told them, “Find something that no one else is doing that will make an impact on families.” They took Blake’s advice and really looked at how DMD affected the family.
When it was time to get Brock a typical Permobile Wheelchair, insurance denied the request twice. They went to another doctor to have them rewrite the request and insurance denied it two more times. Chris then went to a State hearing, and it was still denied. This was time-consuming, frustrating, and a huge hassle for the family. It also left Brock without the equipment he needed to live life to the fullest. That’s where the non-profit, My DMD Hero was born. Chris and Trisha realized if they can raise funds to buy equipment for kids with DMD when needed, it can be ongoing. A wheelchair can cost up to $20,000, ramps upward of $2,000, and lifts or accessories for wheelchairs and homes can cost around $4,000. That is a huge financial strain on a family with an average annual income. Through fundraising, they can provide these DMD superheroes with better equipment and get it to the families quickly.
My DMD Hero was started because Chris and his family understand how important it is to live life to the fullest and are committed to helping other families make every moment count. When children have Duchenne, their muscles start to weaken and break down making it difficult to walk. However, they don’t stop growing and often quickly outgrow their wheelchair or need other types of equipment to help with everyday activities. It’s vital that they obtain equipment that will allow them to have proper support and ergonomic functionality and enhance their overall well-being and mobility. This allows them to participate and engage in daily activities, and social interactions and promotes psychological and emotional wellness.
Through My DMD Hero, they started The Hero Assistance Fund to help families affected by DMD. The funds they raise are distributed to the suppliers/vendors of the equipment, service, or modification the family needs. They provide assistance for items such as manual wheelchairs, power wheelchairs, scooters, smart technology (Amazon Echo/Google Home), Ramps, Standers, Hoyer lifts, Pool lifts, Stairlifts, and more. If there is a service or piece of equipment they don’t provide financial assistance with, like Wheelchair Accessible Vehicles, they provide support and guidance on where to find funding that is available.
The process is easy, and once approved, applicants receive what they applied for in 1-3 months from the date of their application. Below is how their process works.
This organization provides vital assistance to families battling this horrible disease. Providing hope and help to Duchenne families is their mission and without the support of others, it’s not possible. If you would like to bring peace of mind to families that their DMD Hero will have the equipment they need to participate in various activities.
