Montana Fact Sheet

Teresa and Ben Dorman gave birth to their son, Tommy, in January 2020 and he was perfectly healthy. Slowly, Tommy began to show signs that something was amiss and by the time he was two, he lost the ability to pull himself up and crawl, was having difficulties eating, and had a noticeable speech impairment.

In light of Tommy’s symptoms, Teresa and Ben sought answers. While they were seeking a diagnosis, he became very sick and was admitted to the hospital for the flu, pneumonia, and RSV in May 2022; he also had a G-tube placed to combat his eating difficulties. In addition, Teresa and Ben had genetic testing completed for Tommy. On June 3, 2022, the results came back with a diagnosis of Metachromatic Leukodystrophy. While at first they were relieved to finally have a name for his challenges, once Ben researched what this meant for Tommy and read about all of the potential challenges, they realized that maybe having the answer was actually worse. Teresa and Ben were understandably upset, and having to share that news with their other son, friends, family, and colleagues was extremely difficult.

Tommy passed away on June 20th, 2023. Tommy was battling feeding challenges at the end that made it hard for him to keep food down and keep his weight up. He had also struggled with daily pain that made caretaking challenging for Teresa and Ben. The Dormans had to travel across the country to seek proper leukodystrophy care for him and their entire experience with MLD has been heartbreaking. Before his passing, Tommy loved to watch Disney movies, play games on his tablet, and play with his dad and brother.

Newborn Screening would have been able to help Tommy as Teresa and Ben would have known what to do for their son earlier.

 

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