By Abby Cloud | Photo: Matt and Britany Thompson
Trace Thompson is a 3rd grader in Tallahassee who enjoys typical, nine-year-old-boy things: playing soccer on his travel team, visiting the local cat humane society to play with kittens, clogging with his grandma and cousin with the Mountain Dew Cloggers, and going on trips with his parents and younger brother. Trace is your average energetic, kind-hearted, and hard-working boy in the community. However, Trace was recently diagnosed with Adrenoleukodystrophy, or ALD, a rare genetic disorder. As the journey to treat and overcome this disease begins, the Tallahassee community is already embracing the Thompson family and showing that it stands with Trace.
Trace’s relationship with hospitals and illness has always been a bumpy road, always ending up in the hospital due to any type of flu or virus. Britany and Matt Thompson, Trace’s parents, knew that something just wasn’t right in the way their son succumbed to these typical illnesses that most children acquire. After almost 2 years of hospital visits and endless tests, Trace underwent many tests that proved positive for ALD. According to the ALD Foundation and the Myelin Project, ALD destroys myelin, the protective layer surrounding the brain’s neurons and interrupts the functions of the adrenal gland. It affects 1 in 18,000 people and it’s mostly found in males, since it’s an X-linked disease. Diagnosis for this disease is hard to come by, and it consists of such a rapid progression.
“We learned that there were only 3 hospitals in the entire world that specialize in this terrible disease,” Ms. Thompson explains. Her and her husband began contacting the 2 hospitals located in the states to make sure Trace could receive the treatment necessary. They came to a decision after hearing back from Dr. Paul Orchard at the University of Minnesota Masonic Children’s Hospital. “Dr. Orchard not only personally called my husband back after he emailed the doctor, but he also called after work hours and talked to him for a long period of time,” notes Ms. Thompson. It was after this gesture that the Thompsons knew Trace would be in the best care in Minnesota. Even after their first visit to the hospital in May, Mr. and Mrs. Thompson felt confident in the doctors, nurses, and staff. “We absolutely know we made the best decision in choosing the University of Minnesota Masonic Children’s Hospital as the hospital to help save Trace’s life.”
While the Thompson family was working to get their son to Minnesota, the community back in Tallahassee sprung into action. Immediately, Becky Patterson of Tallahassee’s Burn Boot Camp—an exercise program that Mrs. Thompson participates in—established Race for Trace, a 5K and one mile run that will take place on September 7. The purpose behind this race is to fundraise for the Thompson’s cost of travel and treatment. “Within minutes of posting Trace’s story on Facebook, Becky had already sent me a message saying she wanted to help and support us in any way she could,” Mrs. Thompson says about the idea for Race for Trace. “We couldn’t be more amazed at the way our entire community has come together to support our child.”
In addition to the Race for Trace, Tiger Rock Martial Arts of Tallahassee is also hosting a Woman’s Self-Defense Seminar and a Nerf Wars Parents Night Out for children, both on July 27. One-hundred percent of the proceeds from the self defense class will be donated to the Thompson family, while 50% of the proceeds from the children’s Nerf War event will be donated to the family. Another local business, Sweat Therapy, will be hosting a Tough as Trace Donation Workout on August 10, where all funds raised will be donated to the Thompson family as well.
Additionally, a family friend set up a Go Fund Me for the family as soon as they knew their plan of action. “Once we found out that Trace would need chemotherapy, a bone marrow transplant, or gene therapy, we knew we would need help- especially for my husband to be able to take off from work and be there the entire time.” In just over 2 weeks, over $28,000 was raised for the family. Another community effort put forth by family friends was Treats for Trace, a fundraiser in Summerbrooke on June 30. This lemonade and popsicle stand was hosted by some of Trace’s friends and helped raise money for the Thompson family. “It made my heart happy to see children working so hard and so unselfishly to help support their friend. We were so humbled to see all of the support for these children and Trace.” Mrs. Thompson shares.
The community involvement, encouragement, and support has completely overwhelmed the Thompson family in the best way possible. At first, Mr. and Mrs. Thompson struggled with the diagnosis and the initial fear of what was to come. However, they are finding peace as more and more people—from doctors in Minnesota to residents in Tallahassee—ensure the family of four that they will be taken care of throughout this time. “These people are part of his story, and they have been our strength when we couldn’t find our own.” Many have sent Trace’s parents inspiring quotes, songs, and messages, while others have sent gifts to Trace. “Some of these people have never even met Trace or our family,” she admits. “And yet, they are still giving. We are so thankful for every donation, gift, message, text, share, mention, prayer and positive thought.”
Trace’s journey is just beginning as his parents receive more information about starting treatment. Recently, they were told to fly back to Minnesota the week following July 4th in order to complete testing and insert a “port” that will collect Trace’s blood or bone marrow cells. They will return to Tallahassee again before heading to Minnesota semi-permanently as Trace begins chemotherapy and gene therapy, which will take upwards of 100 days.
While this family is taking on more than they could ever bargain for, Mr. and Mrs. Thompson remain hopeful for what is to come. “We all hear about the bad things in this world, in this town, and in this community, but few people take the time to talk about the good; this is the good,” Mrs. Thompson remarks about all of the “good people, good thoughts, and good actions” coming from the community. “This gives us a sense of peace that we need to keep fighting and moving forward in Trace’s fight for his life. We continue to be amazed every single day and we will forever be grateful for every single thing these people and this community has given us.”