My son Manny is 14 years old and has a long and complicated medical history, including quadriplegic cerebral palsy and severe scoliosis. Even on a good day, life can be very painful and difficult for him. Manny has a trach, requires oxygen 24/7, and is fed by GTube. At the end of March this year, he became extremely ill and was transferred to three different hospitals in less than 24 hours as he fought for his life. His lungs were so sick that EMS had to breathe for him during each transport. He spent weeks on various forms of life support and countless IV medications at Lurie Children’s Hospital.
Thankfully, Manny is slowly improving and should be well enough to come home next week, where he can receive one-on-one care as he heals and weans off medications that are causing uncomfortable withdrawal symptoms. Because of his neurological problems and scoliosis, we have to handle his medications very gently to avoid complications that could send him back to the hospital. He misses his family, his dogs, and going to school and speech therapy, where he continues to improve communication with his eye-gaze device, telling us how he feels and what he needs.
Our wheelchair accessible van is essential for Manny’s care, but it urgently needs all new brakes, two new tires, and transmission repairs. In addition, travel expenses like gas and parking fees are mounting up as we make frequent trips for his care. Having the van fixed as soon as possible will expedite his hospital discharge, provide safe and necessary transportation to and from follow-up appointments, and help us address his newer, complicated medical conditions. Support with travel expenses will help us cover gas and parking fees for all these trips, making sure Manny gets the care he needs without added financial stress. It will also allow me to take him to speech therapy each week and, hopefully, let him participate in the few special needs baseball games left in the season that he has missed out on. Most importantly, it will ensure Manny can attend his 8th grade graduation ceremony this month—a milestone he’s been looking forward to.
I would be grateful for any and all assistance in sharing this fundraiser and/or contributing to it. It’s been a long time since I’ve reached out to the community to help achieve a goal benefitting Manny. This one is no different. It is completely for Manny.
Thankfully, Manny is slowly improving and should be well enough to come home next week, where he can receive one-on-one care as he heals and weans off medications that are causing uncomfortable withdrawal symptoms. Because of his neurological problems and scoliosis, we have to handle his medications very gently to avoid complications that could send him back to the hospital. He misses his family, his dogs, and going to school and speech therapy, where he continues to improve communication with his eye-gaze device, telling us how he feels and what he needs.
Our wheelchair accessible van is essential for Manny’s care, but it urgently needs all new brakes, two new tires, and transmission repairs. In addition, travel expenses like gas and parking fees are mounting up as we make frequent trips for his care. Having the van fixed as soon as possible will expedite his hospital discharge, provide safe and necessary transportation to and from follow-up appointments, and help us address his newer, complicated medical conditions. Support with travel expenses will help us cover gas and parking fees for all these trips, making sure Manny gets the care he needs without added financial stress. It will also allow me to take him to speech therapy each week and, hopefully, let him participate in the few special needs baseball games left in the season that he has missed out on. Most importantly, it will ensure Manny can attend his 8th grade graduation ceremony this month—a milestone he’s been looking forward to.
I would be grateful for any and all assistance in sharing this fundraiser and/or contributing to it. It’s been a long time since I’ve reached out to the community to help achieve a goal benefitting Manny. This one is no different. It is completely for Manny.
Organizer
