Meet Jack M: 2020 Family Advocacy Week Champion
Jack is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Jack and his family will share information about his health journey, MUSC Shawn Jenkins Children’s Hospital's role in providing Jack with necessary health care services, and why the public and our elected officials must invest in the future of kids like Jack.
When Jack was 8 years old, he was diagnosed with Guillain-Barre syndrome—a disorder in which the body's immune system attacks its own nervous system. Symptoms include extreme weakness and tingling in the extremities. It can spread to other parts of the body and can eventually lead to paralysis.
“This condition is random and rare,” says Chrissy, Jack’s mother. “It came at us suddenly and seemingly from nowhere. It's been very difficult to watch him medically decline, and it has taken a huge physical and emotional toll on our family.”
This past February, Jack suddenly lost all his muscle strength and was having significant difficulty swallowing.
Since, he has undergone multiple blood draws, two spinal taps, two EMGs, an EKG, and genetic testing. Both parents also underwent genetic testing as part of the diagnostic process.
Jack currently receives biweekly IVIg infusion treatments at MUSC Shawn Jenkins Children’s Hospital in Charleston, South Carolina, to strengthen his immune system. In addition to the infusions, he also has frequent physical and occupational therapy to maintain progress. Jack and his parents travel to the Children's Hospital of Atlanta for inpatient rehabilitation, sometimes staying for months at a time.
“We would still be looking for answers without our children's hospital,” says Chrissy. “They have been amazing with the care he's received and the care we were shown. They knew how to talk to him and get him engaged in his treatment. They also encouraged him to be himself and to express his feelings.”
Today, Jack is regaining strength in his muscles and has a long road to recovery. He loves drawing, singing, video games, and anything to do with cars.