Sugar Grove youngster hoping for some help

Seven-year-old Cooper Groves of Sugar Grove needs a van.

Not just any van, but one that is handicapped accessible.

Cooper has Leigh’s Disease, a mitochondrial myopathy which is a genetic and neurological disease, according to his mother, Jobie Groves.

Cooper is also deaf, although he recently received a cochlear ear implant. When he wears the device he can hear noises, but it is uncertain how much he understands.

Mitochondria are cellular structures that normally provide energy to the body, but in Cooper’s case, they do not. He must be fed through a tube into his stomach.

Time is short for him to win a van, with an estimated cost of $50,000, from the National Mobility Equipment Dealers’ Association, a non-profit organization dedicated to expanding mobility options for people with disabilities.

The organization is holding the contest as a part of National Mobility Month, and on May 9, the organization will count the votes and award vans to three winners, according to Jobie.

People can go online at www.mobilityawarenessmonth.com/entrant/cooper-groves-sugargrove-pa/ and vote, once a day, for Cooper’s van.

Others vying for one of the vans currently have over 4,000 votes while Cooper has less than half of that.

The disease has left Cooper unable to walk or even hold his head upright, and when he needs to see doctors, he must ride in a special-needs car seat rather than his wheelchair. Because of the angle of the seat, he gets car sick almost every time he must travel, his mother said. Additionally, there will come a time when he is too big for the seat.

The family regularly makes a three-hour trip to Pittsburgh Children’s Hospital to see specialists, and Cooper’s ten-year-old brother Nolan has to hold Cooper’s head up for the entire trip. “Nolan is very helpful and is self-sufficient,” Jobie said. During a phone interview with Jobie, Nolan was preparing supper.

She added that the school bus he rides allows him to ride in his wheelchair, which is far more comfortable for him. A van would allow him to remain in his wheelchair for other trips.

Kristie Gould, his private duty nurse, spends nine and a half hours a day with Cooper, riding to and from Warren Area Elementary Center with him on the bus.

“He just keeps getting bigger, making it harder to carry him around,” Jobie said. “He has very weak muscles and can’t walk.”

Jennifer Hoffman, his physical therapist, has worked with him since he was a year old. “His (muscle) tone is so low, you have to completely support his arms and legs when you pick him up,” she said, adding that if anything, his condition has deteriorated over the years.

The occupational therapist at WAEC, Valarie Hobbs, has also worked with Cooper since he was very young. She said they work on his hand skills, switching toys and turning on a bubble machine that he enjoys. She added that he loves to put his arms around “Ruby,” a dog he got for Christmas, and the dog enjoys snuggling with him.

The two therapists agreed that he recognizes individuals and is happy to see them, but determining his actual understanding is impossible as he can’t speak.

“He is definitely aware of what’s going on around him,” Hobbs said.

Hobbs spoke of his parents and brother, saying, “They’re a wonderful family. They’ve fought hard and jumped through hoops to get him the cochlear implant,” explaining that the doctors normally don’t do the implants unless the patient is at least at a nine-month developmental level. “We know he knows stuff, it’s just hard to know what,” she said.

Hoffman added, “They include him in everything, taking him to his brother’s events like the go-kart races. If they go outside, he goes outside.”

Every year, Cooper’s family participates in or sponsors an Energy for Life Walk to raise money for Mitochondrial research, according to the website where his votes are counted.

She said his Lifeskills classmates also include him, and he goes to all the class’ special events.

“They put him in a wagon with pillows all around him, and take him outside for recess when the weather is warm, and he would just laugh and laugh,” Hoffman said.

Two student interns Molly Birt and Heather Soderberg said they enjoy learning from and working with Cooper. “In the month I’ve been here, I haven’t seen him cry once,” Soderberg said.