Teen To Raise Money For JM Cure After Diagnosis

Bumps, bruises and an occasional sunburn are not usually cause for concern for an athletic track and soccer star. Seventeen-year-old Madison Davis’ weekend in April 2017 started with a Saturday morning track meet where she suffered severe sunburn. The next day, she played in a soccer tournament and was twice kicked in the shin, leaving a mark that developed into a huge bruise on her lower leg. Surely neither the sunburn nor the bruise would slow down the Archbishop Spalding junior and Millersville resident for long.

“She took a few days off from soccer after that, hoping to rest and recover. What it did, though, was set off a chain reaction,” recalled Maddie’s mother, Christine Davis. “By the next Saturday, she had huge, painful mouth blisters and a rash that covered her face and hands. A few days later, she developed flu-like symptoms and started becoming really weak.”

Maddie was so weak she would crawl from her bed to the bathroom, and any exertion would cause her to vomit and struggle to breathe. Over the course of just a few weeks, her parents twice took Maddie to her pediatrician, twice raced to a local hospital emergency room, and always heard the same thing: “it’s a virus.”

By May 23, 2017, Maddie had not been well enough to attend school for an entire month. “I forced her to get out of bed and go back to school, telling her, ‘They say it’s just a virus and the only way you can get stronger is to push through,’” said Christine. By 9:30am, the Spalding school nurse called to say Maddie was in the stairwell and couldn’t get up the steps. By the afternoon, Maddie was seen by her pediatrician, had extensive bloodwork and underwent an ultrasound of her now highly swollen arm.

“My husband and I were scared at that point and made the decision to take her to Johns Hopkins [Hospital],” Christine said. “Based on the bloodwork done earlier in the day, she was quickly admitted to the pediatric ward, where a team immediately worked to protect her organs.”

Christine said doctors had an idea what was wrong based certain indicators in Maddie’s bloodwork, but it would require surgery to obtain a muscle biopsy to confirm, a full body MRI, and a muscle electroencephalogram (EEG test). The diagnosis was swift and crushing.

Juvenile myositis (JM) is a rare autoimmune disease affecting just two to four children in a million annually in the United States. The immune systems of children with JM attack healthy tissues and cause inflammation in blood vessels under the skin or in the muscles; the inflammation causes muscle weakness, skin rashes and extreme pain. If the inflammation is in other parts of the body, other systems can be affected, such as the digestive, circulatory and respiratory systems. There is no cure.

Maddie was aggressively treated for two weeks with high-dose steroids and intravenous immunoglobulin (IVIG) therapy. She was then transferred to the Kennedy Krieger Institute in Baltimore for rehabilitation.

Today, Maddie is 19-years-old and entering her sophomore year at York College of Pennsylvania. After two years of regular treatments, she tries to remain positive and live life to the fullest, even if her life isn’t what she planned.

“Getting diagnosed at 17 allowed me to grow up and mature exceptionally quick,” Maddie said. “I faced more mental problems than physical ones within the past two years when my life got turned upside down.”

The former member of the Annapolis division of Naval Sea Cadet Corps was a top athlete and preparing to apply for admission into the United States Coast Guard Academy before her diagnosis.

“We were devastated that I wouldn’t be able to go into the military anymore or play soccer, but I knew that everything happens for a reason,” Maddie said. “I quickly began to explore new options for college. I noticed myself becoming a lot more self-aware and constantly finding ways to make the best out of everything.”

For the first 18 months after her diagnosis, Maddie traveled to Johns Hopkins for two days every three weeks for an eight-hour IVIG infusion. Once she went to college, her patient advocate, infusion nurse and immunoglobulin supply company worked hard to get Maddie approved for an experimental treatment she could administer herself at school. She now receives immunoglobulin (other people’s plasma) subcutaneously weekly. Maddie had to learn how to place the small needles in her thighs where the immunoglobulin goes into fatty tissue via a pump. The constant stream of the immunoglobulin in her system has been successful in helping Maddie gain back muscle strength while producing normal bloodwork.

“As long as her labs remain stable, IVIG will be her only means of treatment for the foreseeable future,” Christine said. “She also receives counseling and is now on antidepressants for the mental health side of this disease. Devastating life changes, along with side effects of the medicines, wreak havoc on all kids with this disease.”

Maddie said, “Being on steroids forced me to deal with a wide range of unpredictable emotions each day. It was a really confusing and hard time, but dealing with it made me the person who I am today, which is a completely different person from two years ago.”

Maddie is studying education and administration and has a goal to publish a book sharing her experience with JM in the hopes of bringing awareness to medical professionals and parents, and support for children.

“Not all illnesses are noticeable,” Maddie said. “I’ve learned it’s important to be compassionate and empathetic in all circumstances. You truly do not know what is going on in someone’s life.”

It’s simple things like smiling at strangers or holding that door for the person behind you that can truly make a difference in someone’s day. It creates a chain reaction of positivity, especially since you never know who might need that little extra push in someone’s day,” she continued. “This is important to remember because you also never know who just came from an eight-hour infusion.”

How You Can Help

Donate plasma. There is a serious IVIG shortage and children are missing their monthly treatments.

Donate or join Team Maddie in the third annual D.C. Walk Strong to Cure JM event September 21 in Gaithersburg. Visit www.curejm.org for more information.