Ron Marinucci: Ryan Groves - October, 2013

Ron Marinucci: Ryan Groves - October, 2013

Michigan runner Ryan Groves participates in track and field events, as well as in other sports such as basketball, soccer, and basketball. That’s not particularly unusual for one who loves athletics and competition as much has he does.

But Groves’ story is special. He’s a Special Olympics medal winner, both at the state and national levels. In the recent 2013 Michigan Special Olympic Summer Games, he brought home a gold medal in the softball throw, “a favorite event,” he said. In addition, he finished sixth in the 100 meters and grabbed a fourth place in the pentathlon, five events composed of the 100 meter dash, long jump, shot put, high jump, and 400 meter run.

In the 2010 Special Olympics US Games, the now 26-year old from Brighton won two silver medals, individually in the 400 meters and as a member of the 4 X 100 meter relay team.

Groves is afflicted with tuberous sclerosis complex [TSC]. TSC is a rare genetic disorder that affects about one in 6,000 people. It is characterized by the growth of non-cancerous tumors that can occur in the brain, kidneys, skin, and other organs. Although symptoms and conditions vary by individual, TSC causes significant developmental and health problems such as in kidney function, light-sensitivity, and characteristics of autism. It is a leading cause of epilepsy.

Groves’ mother, Kathy, explained. “Ryan was diagnosed with TSC around his first birthday. Initially, mild seizures were his primary symptom. The diagnosis was confirmed by his pediatricians and a neurologist after careful evaluation of his seizure activity, EEGs, very subtle skin lesions, and CT scans of his brain which confirmed small benign growths [tumors].”

As she noted, this was 25 years ago. Then, information on TSC was limited, often found only in medical journals and textbooks. And much of that information was obsolete and provided worst-case scenarios. “Ryan’s neurologist wisely counseled us to take it slow, to deal with Ryan’s needs as they arose.” They sought out help and support from the Tuberous Sclerosis Alliance.

Yet, none of this seemed to damper Groves’ enthusiasm for activities, especially basketball. “Ryan has always been very active and athletic.” Basketball was his first love. “He was attracted to basketball courts and gyms wherever we went…and had multiple children’s hoops in his play room.”

First in Minnesota and then, after moving, here in Michigan, Kathy and his father Bob helped him find, “adapted athletic teams where he could socialize and compete with other students.” This led to his involvement with the Michigan Special Olympics. Groves added, “I participate in Special Olympics so I have an opportunity to hang out with my friends. [It] empowers me.”

He was honored to represent the state of Michigan, along with about 50 other athletes, in the 2010 national Special Olympics. Not liking to run alone outdoors, to train he would run indoors on a treadmill for an hour to an hour and a half three or four days a week. He also worked with weights and did other cardiovascular exercises. “Training for the Games isn’t easy,” he said, “but I love the competition and being part of a team.” Some of his training was with Special Olympics teammate and friend Molly Hincka, who represented the US in the 2011 International Special Olympic Games in Athens, Greece.

The US Games in 2010 taught him about pacing, how to manage his stamina and energy in races. He also gained a measure of extra satisfaction in winning his silver medal in the 400 meters. A rival had beaten him in a preliminary 400 heat and “taunted him just a bit,” Kathy recalled. “It was just the fire he needed. He came off the blocks quickly, almost too quickly we feared. But he settled into a good pace, battling for third place until after the second turn. From out of nowhere, he ramped up the afterburners and quickly overtook his chief competitor. He ended up 3.3 seconds ahead of him!”

Currently, Groves limits his training to weekly practices with his team. He’s aiming for the 2014 US Special Olympics Games, though. His friend Molly Hincka and coach PJ Sapienza are training for a marathon and are encouraging Groves to join them. “So far,” Kathy noted, “he has resisted,” adding, “but as Ryan turns 27 this year, he’s finding that the pounds are adding up. If the choice becomes eating hearty and running or going on a diet,” she quipped, “Ryan is thinking that putting in more miles is the more attractive alternative.”

As might be expected, his parents are his biggest fans. They “cheer him on. He inspires us every day with his determination to never let his TSC stand in the way of competing and playing sports, the things he loves to do most.”

Grove’s can serve as an inspiration to others as well. “I’d like other people with TSC to know that they can do whatever they put their minds to do. If I can encourage others to compete in the Special Olympics, they might like it just as much as I do. They don’t know that they can do something until they try it.” And, “I may have TSC, but it doesn’t have me.”

You can follow Ryan’s progress on his Tumblr page at www.TSCAathletes.com, where you can also learn more about efforts to inform the public about TSC and inspire those who live with TSC.

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