Help Kasper on His Journey with Arthrogryposis

Kasper is a 16-year-old boy with arthrogryposis. When Ewa, Kasper’s mom, didn’t feel him moving during the pregnancy, she suspected that there might be a problem with her baby’s development. At the 20-week sonogram appointment, the doctors noted that Kasper had bilateral clubfoot, hand, arm, and leg deformities. At the time, there was no specific diagnosis for Kasper, but Ewa was told that the baby most likely had neurological problems.

When Kasper was born on December 5, 2005, in Silver Spring, MD, he was diagnosed with severe arthrogryposis multiplex congenita (AMC) amyoplasia type. This is a condition characterized by stiff joints and reduced muscle mass. Kasper is unable to walk, sit up, or bend his knees, elbows and wrists. Without assistance, he is unable to go to the bathroom, feed himself, or turn over while sleeping. He uses a powered wheelchair for everyday mobility. 

To date, Kasper has undergone 11 surgeries to correct joint fractures and to transfer and lengthen his muscles to improve the range of motion in his elbows, wrists, fingers, hips, knees, and ankles. He has spent hundreds of hours in occupational and physical therapy. 

On September 8, 2020, Kasper was admitted to Shriners Hospital in Philadelphia to prepare for spinal fusion surgery to correct his rapidly-progressing 125 degree scoliosis and 160 degree lordosis. A halo brace was secured to Kasper’s head to slowly straighten the spine, and a feeding tube was installed in Kasper’s stomach through his nose and throat. Kasper needed to rapidly gain weight - at the time, he only weighed 52 lb. Additionally, the scoliosis and lordosis had caused Kasper’s internal organs to shift, leaving them compromised. 

On October 27, seven weeks after his admission to the hospital, Kasper underwent a 10-hour surgery performed by a team of 15 doctors, nurses, and technicians. During the surgery, Kasper lost lots of blood and received several blood transfusions. Despite the high risk of a spinal cord injury, which could have left Kasper paralyzed, the surgery was necessary to prevent neurological problems and possible death. 

Taking care of Kasper is expensive, and his family has exhausted their resources. Currently, Kasper needs several pieces of medical equipment: arm braces, a hospital bed mattress, a manual wheelchair, a wheelchair lift for a van, a stander, a home lift and bathtub adjustment and intensive occupational and physical therapy as well as other expenses related to his care. 

On behalf of Kasper and his family we are asking for your financial support. Please consider making a donation, no matter how big or small, to Kasper’s fund. If you are unable to help financially, please consider sharing this post with your family, friends and colleagues. Kasper and his family will greatly appreciate your help!