Story of Impact: Mighty Penguins Sled Hockey

Posted by Reeve Staff in Daily Dose on January 04, 2018 # Quality of Life, Adaptive Sports

Four-year-old Alex Brown grinned ear-to-ear when he visited the Stanley Cup after the Pittsburgh Penguins 2009 championship win. Already an avid hockey fan, he had received skating lessons for his birthday. But life had a different plan when just a few days after seeing the trophy, a spontaneous spinal epidural hematoma left Alex with a C8 level spinal cord injury.

“Soon after leaving the hospital, we brought Alex to his first Mighty Penguins Sled Hockey practice and he loved it,” said Amy Brown, Alex’s mom and Mighty Penguins executive director. “He still had his trach the first time he went out on the ice. He was hooked. Alex is now 12 years old and plays on the junior team.”

Founded in 1998 by the parents of three young boys diagnosed with spina bifida, Mighty Penguins Sled Hockey operates therapeutic and competitive adaptive ice hockey programs in the Pittsburgh, Pennsylvania, area. Created to support physical fitness and encourage sportsmanship, the organization has a busy schedule with weekly practices, local and travel games as well as hosting a major annual tournament.

“Getting a good workout, building self-esteem and being part of a team are just a few of the benefits that sled hockey has to offer,” said Amy, whose husband, Eric, also serves the organization as a coach. “Our players consistently remark that the program gives them a sense of athletic equity and pride.”

In 2017, the Mighty Penguins received a Christopher & Dana Reeve Foundation Quality of Life grant to support program expansion by purchasing additional equipment, including eight sets of sticks, five traditional sleds and three custom high back sleds with chest straps and additional supports for players who are challenged with balance and core strength.

“The additional assistive equipment enables the players to be more comfortable and happy so they can stay on the ice longer,” said Amy. “We see a lot more smiles out there.”

The Mighty Penguins organization was already familiar with the Reeve Foundation from a 2014 Quality of Life Grant it received through their partnership with the Pittsburgh Penguin Foundation. That grant supported the addition of an intermediate-level team. Today, the program serves more than 70 players on four teams ranging in age from five to over 60.

“We have no age limit. The older players are wonderful mentors and bring tremendous positivity to the program. The Reeve Foundation has been incredible in their support which has allowed us to outfit more players with special needs,” said Amy. “These grants have really opened the door in terms of what we can do.”

For the Brown family, the Reeve Foundation plays an even larger role as a resource for life with a spinal cord injury. Amy says the Reeve Foundation was the first place she turned to when Alex was injured and it has since served as her primary source for research and information.

“About four years ago, we learned that the Reeve Foundation NeuroRecovery Network® (NRN) at the Frazier Rehab Institute in Louisville, KY, would expand to include pediatrics,” said Amy. “We jumped on the opportunity and Alex became one of the first participants.”

Each summer, Alex spends 12 weeks at the NRN.

“Alex has progressed from minimal to full sensation and movement down to his toes,” said Amy. “Each year we are so grateful to continue to see him progress as he gains more strength and control. It is astonishing to see how motivation and effort the therapists can get out of these kids.”

Alex has also gained more bladder and bowel control. He is able to take steps and is working on bearing weight.

“The NRN is so specialized; we couldn’t get this level of care anywhere else,” said Amy. “It has also has connected us to other participants and families living with spinal cord injuries. It has been such a great opportunity for Alex to interact with others and see them improve, too.”

Of course, the family also brings Alex’s hockey sled along each summer to get some ice time in. This fall a second NRN pediatric site will open at the Children’s Hospital of Pittsburgh of the University of Pittsburgh Medical Center and the Brown family is proud to be part of encouraging the site location.

“Alex is very goal oriented,” said Amy. “Both the sled hockey and NRN have been a significant part of his continued spinal cord injury recovery. It will be wonderful to have both now near our home.”