Hello everyone! We always have people asking us how they can help, first and foremost, YOU can help by giving us your TIME. We would love for you to come hang out, babysit, play games, bring a meal, live, laugh and love on us more than anything else…but if you don’t have the time to give, we obviously could always use help with all the financial burdens that come with having medically fragile humans living in your home. For us, we have two of them and the costs of all their needs has only increased. We are hoping adding this fundraiser to our website will help us ease some of the burdens and give all of you an easier way to help if you feel led.
Some of our current costs associated with the boys and their disease, Duchenne Muscular Dystrophy include but are not limited to:
Clinical Trial- time, fuel, food, assistance with other kids, ect…
Home Modifications-door frames, flooring. bathrooms, door ramps, pavement, shelving, ect…
Medications-what insurance doesn’t cover, vitamins, pain creams, ect…
Medical Equipment-wheelchairs, shit insurance wont cover, shower chairs, pool equipment for therapy, adjustable beds, sheets, accessible furniture, ect..
Adaptive Gaming Equipment
Extracurricular Activities-power soccer chairs, equipment, travel, off road wheelchairs, ect…
Travel- vehicle repairs and lift maintenance, adventure, bucket lists, time, ect…
Diet- healthy food options, plant-based diets, snacks, drinks, ect…
These are just some of the expenses, on top of all the ‘normal’ life expenses, as you can imagine, it is ALOT! and we are doing it ALL on our own. We dont have the help of extended family. We dont have a back up plan or any tangible options, we just figure it all out, do it and cross our fingers that it all just works.
And luckily, it usually works out. We are doing okay, but as you can imagine, having two non ambulatory children, rapidly losing all their muscle function, while they slowly deteri0rate is not a cheap ordeal. It has been extremely difficult to keep up with it all. Any help would be beneficial to our boys and our family!!