Jack M.
North Carolina
Birth Date - December 8, 2009
Diagnosis - Gastroparesis &
Dermatomyositis
Theme: Star Wars
Due Date: November 1, 2019
Jack's Story
At age four Jack began having issues eating, chronic vomiting, and became extremely ill. The pediatrician ignored it for several months. After he lost a significant amount of weight and couldn't eat and keep anything down they referred us to UAB Children's Hospital. After weeks inpatient he was finally diagnosed with Gastroparesis. With treatment (medications) and avoiding a lot of different foods he seemed to be managing much better.
Last summer Jack was having bowel issues. We made a few trips to the doctor and were referred to Levine Children's Hospital. He underwent tests and was diagnosed with familial adenomatous polyps. After treatment and medication we were once again settling into what our new normal would be.
Two months ago our active boy began sleeping all the time, had severe muscle and joint pain and an extremely irritating rash on his face. We made 4 trips to the ER. Each time receiving a different diagnosis. Our last trip resulted in lots of tests and specific blood tests. We got called for an emergency appointment at Brenners Children's Hospital, and on June 10th Jack received the diagnosis of Dermatomyositis. He was admitted to the hospital and began treatment, which includes daily medications, weekly shots, monthly IVIG infusions, and physical therapy.
Jack will have many limitations moving forward. Dermatomyositis is a rare autoimmune disease where the body's immune system begins attacking itself. The medications used to treat his condition are harsh and suppress his immune system, which puts him at greater risk of colds and infections. The disease causes a very painful rash, skin issues, muscle deterioration and pain, joint stiffness and pain, massive headaches, and extreme fatigue. It also has other more serious side effects. As a fun loving 8-year-old, the muscle pain and weakness have hit Jack hard. Most days he doesn't have the strength to get out of bed or energy to do much. Another issue is exposure to the sun greatly increases his chances of a flare up. So he is to avoid sun exposure and wear high spf sunscreen, UV protection in clothes, eyewear, and a hat when he is outdoors.
"Jack's quilt arrived just in time for his 10th birthday, and he absolutely loves it! He loved taking time to look over it closely, admiring the stitches. He loves all the squares and everyone's love and time they put into it. He feels very blessed that everyone did this for him."
