If a couple of words could sum up Hunter, 6, from Missouri, they could well be “all in.” Sports are a particular passion, and he treats every sport with the same enthusiasm and commitment. His basketball and flag football coach this year regularly heard his shouts from the sidelines: "Put me in, coach! I'm ready to play today!"
Hunter’s determination was also evident during the last basketball season, as he worked hard on his skills and, at the end of the season, scored his first basket! His family cheered loudly, even though Mary, his mom, chuckled that it was in the opposition's hoop!
Flag football is also on the schedule for this fall, after he fell in love with it last season, even dressing up as KC Chiefs quarterback Patrick Mahomes - helmet and all. Mary said, “He thinks he’s ready for tackle, thankfully not an option at this age, but this sums up his enthusiasm to get stuck in.” Since stepping up to the plate last spring at T-ball, he started growing out his hair like Bobby Witt Jr., for the Kansas City Royals! He is inspired by sporting heroes at every turn.
It’s not just land sports that Hunter is taking on; he’s an avid swimmer and has even tried water skiing. Mary reflects, “Swimming is a great activity for anyone with Myhre and something we really encourage with regular swimming lessons.” When not in the water, the family takes their boat to the lake and spends the day enjoying the scenery and running and jumping off the dock.
When Hunter’s diagnosis came through, the family decided that they wanted their children to experience as much as possible. “Our goal is to have very few limitations on what we do as a family, from school and church to travel and extracurricular activities. We work hard and play harder to soak up every minute of the day together!”
This perspective has seen the family travel widely, Mary said. “We travel to Branson, MO, two or three times over the summer to boat on Table Rock Lake and go to Silver Dollar City and White Water theme parks. Hunter wants to live in Branson because he loves it so much. This year over spring break, we visited Tucson, AZ, to see some family and then also went to the Phoenix and Scottsdale areas. We went to a Kansas City Royals spring training game in Surprise, AZ. Last month, we went on a Disney Cruise.”
School has started again, with Hunter entering first grade. He loves learning, recently took up the piano, and has his eye on a trombone, too. “Hunter is very smart and observant,” said Mary. “He is learning to read, and his mind questions everything he sees or hears, which is exhausting for mommy's brain sometimes, trying to answer all the questions he fires out! He keeps us on our toes for sure. Myhre Syndrome does affect Hunter's eyes and ears, and he does have some social/behavioral challenges, but we are very blessed that, overall, he is a very healthy and strong little boy who is like the Energizer Bunny ... he keeps going and going and going.”
Hunter, everyone in the Myhre community is cheering you on with all of your hobbies! What an inspiration Hunter and his family are to us all. Thank you to the Porter family for sharing your story.
We love hearing from the community, sharing their passions and celebrating their lives. If you’ve got a story, please pop kwears@myhresyndrome.org an email.
