Meet Hunter

Born on July 5, 2002 at 2:47am, Hunter Morgan Horkheimer was born 8lbs 12oz and 22 inches long. He arrived with a thick head of dark hair, eyelashes like his mom, feet like his father, and despite his midwife insisting he would not wish to eat for several hours, he was clearly born with an appetite. He was a happy, healthy baby. Or so we thought. Even as early as 6 months old we noticed digestive issues. He never crawled, and when he started to walk, he would “walk” his hands up his legs to stand. Doctors minimized our concerns, saying he would grow out of his delays. By age 3 ½, we received the dreaded diagnosis of Duchenne Muscular Dystrophy. We were given the advice to go home and love our child – there was no cure, no hope.

Luckily, things are changing in the research horizon for boys like Hunter. While he has an unusually rare form of an already rare disease, there are more trials and treatments coming down the road than ever before. Nutritional advice is more proactive. The life expectancy has jumped 10 years in the last 20, and every year that number creeps up further.

Hunter is now using a power wheelchair. If it’s the little things in life that make us happy, receiving his power chair gave Hunter a new joy, a new freedom. He was no longer the last person in line, the slowest, and always tired. At 5mph, he was now the Tasmanian Devil on the school asphalt, but has always driven with the care of holding a baby bird when near other people. Hunter's latest passion is Power Soccer. This accessible sport has been the natural thing for a boy who wants to be a boy. Always wanting to keep up with his friends and play ball, Power Soccer has given him the opportunity to do so. 

While we focus on the joys and triumphs of life, we are reminded of ever present realities. Hunter can’t walk or even stand, so he needs a “full transfer” to the toilet or shower. Right now, this means I (his mom) am lifting all 82lbs of his love in and out of his chair by hand. His power chair is his legs, so an accessible van is needed for transportation to and from his home. The equipment and home layout needed to take care of Hunter differ from most children.

Despite his physical challenges, Hunter maintains a life long dream of spending time in space. He had the amazing opportunity to visit NASA in Houston, Texas last fall for his Make A Wish trip. He and his best friend were the first children ever allowed on “Mission Control” during a launch. He loves science, has always been generous to friends and family, and loves to hug his grandma.  Although he enjoys all the farm animals at home, he loves dogs most of all. His passions are Lego’s, Minecraft, travel, and Power Soccer.

Update on Hunter: It is now the end of 2016. The generosity of friends and family members translated into Hunter travelling to Minnesota in the summer of 2014 to have a custom made Power Soccer Chair made to his specifications. He also had the opportunity to attend a 5 day camp while there to get a feel for his new chair and hone in on his power soccer skills. Now in his third year competing with the Sac Valley Flames, he was given an award for “Best All Around Player”. His coach is able to place him anywhere on the field; Hunter plays any position, but his favorite move will always be the “spin kick”!

2015 brought some challenges. The combination of being in a chair full time and taking a corticosteroid to slow the progression of Duchenne resulted in multiple (they stopped counting fractures at some point) compression fractures on his spine.  While this caused much pain, he still played power soccer throughout the season. Luckily, a brace made things more comfortable for him, while providing support to his spine. His bones have healed at this point, and it does not appear that any fractures have recurred. We were also blessed with Orion V, Hunter’s companion dog from Canine Companions for Independence. He chose Hunter; Hunter chose him. Love at first site! We brought him home on Valentine’s Day. He continues to love Hunter every day, and we both feel very lucky to have him in our home.

2016 has been a pretty good year! Hunter’s mom has been able to work part time, with lots of help from Hunter’s grandparents when school wasn’t in session. Our van tipped the 200,000 mile mark, and at 215k it “passed away”, and is currently composting in the driveway. A leap of faith was taken, and we now have a new van that we hope will be good for another 200,000 miles. It even tows, so we can take a trailer if Hunter gets invited to a regional tournament in Arizona, for example. J

Looking forward to 2017: Lots of Power Soccer. Paying off our van. Attending the PPMD Conference in DC, February. Power Soccer Camp in Minnesota and Berkeley. Attend the World Cup for Power Soccer, being held in Kissimmee, FL (1st time in the US!).