From the outside, Matty looks like your typical 14-year-old who enjoys sports and, like many Minnesotans, especially hockey. But all those sports and activities had to come to an abrupt stop when he was first diagnosed with immune thrombocytopenia or ITP – a platelet disorder where the blood does not clot as it should because of a low platelet count. This meant Matty had trouble stopping the bleeding when he had a cut or injury.
Spots then bruises
It was around Thanksgiving 2022, after a day of skiing, that Matty first noticed spots all over his feet. He and his mom, Tracie, thought maybe his new ski boots were too tight. Then, two weeks later, the spots appeared all over his body along with big bruises on his legs. Tracie, who is a physician, knew it was time to get to the doctor. They went to the clinic the next day, got lab tests and found out the diagnosis.
“My first thought was how long is this going to last? My dad looked it up and found it could go away in a couple weeks. But mine has just kept going,” remembers Matty.
Care at Children’s Minnesota
Matty was referred to the cancer and blood disorders program at Children’s Minnesota and had his first appointment in early 2023. The family first met with Dr. Jawhar Rawwas who explained everything about ITP and answered the family’s questions.
“We went in with a million questions and Dr. Rawwas was calm and very reassuring and talked to Mattie at his level,” says Tracie.
Matty eventually switched to seeing Dr. Stephanie Fritch Lilla as the management of ITP is one of her specialties.
“Dr. Fritch Lilla is excellent. She talks right to me. She knows what I’m passionate about and has been supportive as I go through this,” describes Matty.
Living with an invisible illness
One of the hardest parts about having ITP for Matty is he feels fine and on the outside he looks fine.
“Sometimes it can be hard to explain. I mostly just tell my friends I have a blood disorder. It not always easy for others to understand,” says Matty.
Before the diagnosis, Matty had made the local youth association hockey team. But with ITP he could only watch.
Treatment for ITP is about bringing the platelet count to a safe level and trying to achieve a good quality of life. Initial medicines used to raise platelet count include steroids and IVIG (intravenously given antibodies). The treatments allowed Matty to get back to what he loves, if only for a brief amount of time.
Access to clinical studies
A few weeks after diagnosis, Matty joined a national study of a medication that’s used by people with chronic ITP. The medication is designed to help patients maintain higher platelet counts more consistently than steroids and IVIG. Enrolled patients are randomly selected to either receive the medication or follow the standard treatment of steroids and IVIG.
“We did not get the drug, but we still went forward with the study. Matty felt empowered to help other kids with ITP,” said Tracie.
In May 2023, Matty qualified to transition from use of the initial medications – steroids and IVIG – to the study medication with a goal of sustaining platelet counts that allowed him to participate in the activities he loves. His platelet count slowly started going up, eventually reaching the “magic number.” Over summer, he was back to hockey and baseball.
“ITP is a challenging diagnosis and can require heartbreaking changes in lifestyle for those impacted,” Dr. Fritch Lilla explained.
There are a number of possible treatment options, however none of them work for every patient and all of them have potential side effects.
“As Matty has experienced, the response to each therapy can be hard to predict and we often wait anxiously for platelet count results to determine if the level meets the required number to allow safe participation in their desired activities,” Dr. Fritch Lilla added.
The physician was thrilled to share how Matty had done an amazing job navigating the ups and downs of his care journey, and how the program’s goal is to help patients maintain a good quality of life in addition to their medical safety.
The clinical trials Children’s Minnesota offers for ITP not only provides patients access to new treatments, they also help the organization learn new ways to manage ITP and allow improved quality of life, according to Dr. Fritch Lilla.
Next for Mattie
Matty recently started 8th grade – with freshly bleached hair! For many kids, ITP will resolve after about six months. Unfortunately for some children and young adults it can persist and potentially become a chronic illness they must manage throughout life. Matty’s currently considered in the persistent phase. For other children and teens with ITP, he says, “Just be patient and find activities that aren’t too risky, but still fun. Find good friends to hang out with.”
A few years from now, he hopes to still be doing what he loves – playing hockey and skiing with his friends.
Learn more about ITP’s symptoms and different phases
Make a difference
Shine Bright for Kids is a fundraiser for the cancer and blood disorders program at Children’s Minnesota, which cares for more than 3,500 kids— from babies to young adults — every year. Your support can make a difference for patients with ITP, like Matty. Your gift supports everything from special therapies to life-saving research to mortgage and rent relief.
Donate now at childrensmn.org/shinebrightforkids.