Brett Kingsley

Campaign for a Wheelchair Accessible VanMy youngest brother, Brett, was born with a terminal genetic disease called Spinal Muscular Atrophy (SMA) type 1. As the oldest sibling, I am four years older than Brett and my earliest memories are filled with countless struggles yet priceless memories with him. His condition affects all the muscles that are attached to his spine, and they will continue to decline in strength. He has very low muscle tone but is mentally normal. His early prognosis was very poor and he was not supposed to live past the age of 2. He contracted RSV at 10.5 months of age and was hospitalized for two months. At the time, my parents were given the difficult choice of Hospice or having him go home on a ventilator with a trach and g-tube. They chose the latter. My mom would have never forgiven herself if a treatment or cure was found and they went the hospice route. Brett is now 17 (yay) and is going to graduate high school in the spring of 2024! He has defied the odds due to medical advances and a treatment that prolongs the progression of the disease.When the decision was made for the tracheostomy, g-tube, and ventilator, our Mom knew life was going to be more challenging but she refused to let it stop the possible opportunities for Brett. He was a normal child with muscles that did not want to work. She didn’t want to live with any regrets. Brett was going to live life to the fullest. So far, he has played baseball for 14 years, football for 2, and soccer for one year. He plans to play in the local Special Olympics this spring and recently was in the school’s talent show telling jokes, and he participated in a marathon. He loves movies, animals, music, sports, and going for walks. If Brett can do it, he’s there! He’s even gone on a helicopter ride at the state fair and has been on a giant swing 40 feet in the air.Brett has taught us so much about life. With all his daily challenges, he wakes up each morning ready to face the day. He views life as opportunities to do things and he does not want to miss out on anything!For his entire life, he’s navigated the world through his motorized wheelchair and enjoys the freedom it gives him. Although he loves traveling to the store, sporting events, or the movies, it’s a lengthy process to leave the house.Our Mom is now a single mother of three and Brett’s main caretaker. She gave up her career when she started a family and went back to school later in life to become a nurse for Brett. She would do anything for us and she never complains. Anyway, leaving the house is a process and it takes time and effort. The procedure goes as follows: Our Mom lifts Brett and puts him into his wheelchair. Reconnects the ventilator and straps him in for safety. Drives him to our 16-year-old van that is NOT wheelchair accessible and lifts him out of his wheelchair and into his car seat. She reconnects his ventilator, pulse ox, feeds and straps him in for safety. Dismantles parts of the wheelchair for it to fit into the van. Then she has to set up a manual ramp, drive the wheelchair into the van, and strap it down. The ramp is then put into the van from the rear and in between the seats. His emergency bag is put in the van, the equipment is double-checked and the power cord to the ventilator is connected. (Video of the process is coming soon) The process is done in reverse when the destination is reached. In the end, she’ll end up doing this 4 times throughout a one-stop trip. This one stop adds about one hour to the commute time but it could be longer depending on inclement weather.That said, our mom is getting older, and Brett’s only getting heavier, and it’s time for a handicapped van with a lift. She only has so many 80-pound deadlifts left at the age of 57. This would mean Brett’s quality of life and our Mom’s quality of life would improve greatly. It would probably be “life-changing” for both of them! Our Mom works hard for the three of us but again, never complains. The cost of a wheelchair-accessible van is definitely out of reach for her modest income. If you are fortunate to be able to contribute to this cause, our family would truly be humbled by your generosity no matter the amount. Everyone’s contribution to Help, Hope, Live, a 501(c)3 charitable organization for Brett’s campaign is tax deductible. The funds raised will be used for the purchase of a wheelchair-accessible van and additional out-of-pocket medical costs.Brett has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.Thank you for your support!