Help Carsten Get a Vehicle for His Power Chair

We are requesting help to purchase a vehicle that can transport my son with muscular dystrophy, his power chair, his twin brother, my wife and me. Our current vehicle cannot handle the weight of the power chair, and my son really needs it. Here is our story.

In late 2021, at the age of 12, our son, Carsten, was diagnosed with Muscular Dystrophy. His symptoms were initially milder than other children with DMD, so no one suspected his condition. While in therapy, his therapist noticed muscle weakness in his arms and suggested he get looked at by a Neuromuscular specialist. Carsten remained ambulatory during this time while seeing a therapist one day a week. His therapist had nominated him to Make a Wish. We as a family went through the process and interviews with Make a Wish and Carsten decided he wanted to swim with Dolphins. Carsten really liked being in the water & as a family we spent as much time as we could taking him to the ocean & pools so he could swim & get low impact therapy. They suggested we go to Hawaii for our trip, and we began planning the adventure together.

Spring break 2024 came and we flew to Honolulu. The trip was going as expected. Photos on the beach, snorkeling, luau, Honolulu Zoo & Aquarium, trying new foods and exploring the island. On our last full day on the island, we went to Pearl Harbor. Carsten started to not feel well and vomited. I took him to the bathroom & he became unresponsive. My wife, Carsten’s twin brother & I cleaned him up and took him to the van to get him in the AC. This is when he started to turn blue. We took him to the closest ER to get him seen & diagnosed. He tested positive for influenza and pneumonia & because of his DMD, they wanted him to be transported to the only children’s hospital on all the islands, Kapiolani Medical Center for Women & Children. He was admitted on March 29th & he stayed at Kapiolani for two more weeks. During the first week in the hospital, he kept having V-tach episodes with his heart. The Doctors and Nurses gave their best effort to get him stabilized to fly home but nothing seemed to be working. On the evening of April 6th. I came to the hospital to relieve my Wife who at this point did not leave his side. She wanted to get a shower, get non hospital food and see our other son. I remember Carsten making a noise, his face frowning, and all the alarms went off. Melissa runs into the hall screaming “ I need help” Carsten had gone into a pulseless v-tach. It seemed like everyone on that floor rushed into his room. Doctors, Nurses, the crash kart. A nurse got on top of him and started chest compressions. I stood behind my Wife with my arms around her holding her as she screamed and cried as we both watched our son code. Four minutes went by & he was brought back, that started our second week in the hospital. At this point I think we exhausted the abilities of the hospital as they talked to us about putting him in hospice. We knew that this was not what should be done, he is far too young, and we fought for days to get him back to Ohio. His cardiology team was at The Cleveland Clinic and that is where he needed to be.

On April 14th, Carsten was loaded into a medical transport jet to be flown back to Cleveland. We stayed on the heart failure floor of the PICU until we learned that the only way we could keep our son was to put in an LVAD (Left Ventricular Assist Device), but he was too sick for open heart surgery. Our only option to get him healthy enough to even try open heart surgery was to put in a device called an Impella pump. That device was put in on April 30th. Carsten recovered well enough to have his open heart on May 7th. He stayed in the PICU until June 12th when we were sent to Cleveland Clinic Rehab. He worked on regaining as much strength as possible and finally, after 4 ½ months in the hospital, we were able to go home on July 25th. .

Carsten has put so much effort into getting better. We are so proud of him. He can go to school for half the day, and he has a nurse that constantly follows him around in case he has issues with his LVAD. He can walk 100-150 feet with the aid of a walker and is able to transfer from his wheelchair to bed or the couch. His condition will only get worse as time goes on and there is simply no way of telling how long his LVAD will be able to keep his heart healthy.

We recently were approved for his power chair which will help him in his day-to-day life at home and at school, but at pushing 350 pounds in just the chair alone. I do not have a vehicle that can transport his chair and him. This is the reason for the Go Fund Me. Carsten can’t be submerged in water any longer due to his LVAD, but I still want to be able to take him to the beach to see the ocean, to go to the Zoo & all the things that we used to do before his decline. Being able to transport him with his power chair to Akron Children’s and The Cleveland Clinic to keep him as healthy as possible and give him the best quality of life.