Thriving with Epilepsy: Thomas Putnam

Thomas and Anna Putnam may just be the only non-twin siblings in the world with an SCN8A epilepsy diagnosis, giving them both a rare view of their own epilepsy by seeing first-hand how it affects the other. This year, Thomas was named the 2018/2019 EFMN Winning Kid and has become a leader for other youth with epilepsy. Some of his responsibilities include throwing out the first pitch at a Minnesota Twins game as well as traveling to Washington D.C. and participating in the Teens Speak Up! advocacy program.



Thomas's Story 

Thomas and Anna Putnam share a bond unlike any other brother and sister. They may just be the only non-twin siblings to have an SCN8A epilepsy diagnosis in the world. This rare form of epilepsy is due to a sodium channel disorder and affects the 14-year-old Thomas and 11-year-old Anna in similar ways.  

“Since they are unconscious during their seizures and don’t remember them happening, they also understand more about what happens to themselves by seeing it happen first-hand to the other. Though they tease each other and bicker as many siblings do, they also understand one another like no one else ever will and there is beauty in that,” says their mother Rachelle (pictured above).

Thomas and Anna have been supporting each other their whole lives, including this year when Thomas was named the 2018/2019 EFMN "Winning Kid." The Winning Kid program recognizes a young person with epilepsy as a leader in the community and puts them in a position to support others.

“The Winning Kid program has been so much fun for Thomas. He’s so used to being the one needing help, it’s been fun to watch him be in the spotlight and helping others. He truly shone at the Shining Stars event at the Mall of America when he helped a little girl who was also a Shining Star to be brave. She was afraid to meet SpongeBob but clung to Thomas, held his hand, and smiled ear to ear. He has a kind and gentle spirit that people gravitate towards,” says Rachelle.

As the Winning Kid, Thomas’ list of duties includes kicking-off the Rise Above Seizures Walk, speaking at the Annual Shining Stars get together, throwing out the first pitch at a Minnesota Twins game, going on stage at the Rise Above Seizures Gala, and traveling to Washington D.C. to be in the Teens Speak Up! advocacy program and meet with his congressional representative. The Winning Kid program empowers youth with epilepsy and gives them a platform to raise awareness and be an advocate for others.

Although the list of responsibilities is long, Thomas is used to a busy schedule as he’s on the Stillwater High School swim team and adapted soccer squad, participates in Special Olympics bowling and basketball, and is part of the Minnesota Special Hockey program. 

“Thomas has always been a very determined child whose tenacity has served him very well. Every time he gets knocked down, he slaps a smile on his face and tries again. His positivity is infectious and his willingness to give his all is inspiring and motivates so many,” says Rachelle.



You can learn more about Thomas and the Winning Kid program here. If you have a child with epilepsy sign them up to be a Shining Star and receive exclusive event invites throughout the year to meet other parents and kids affected by seizures.

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