Seven-year-old Jake Grys has a rare disease that causes his bones to be very brittle and break easily. The Pekin boy is just under 30 inches tall, weighs about 25 pounds and is about the size of an 18-month-old baby. He's unable to access things around his parent's home and the TV show Extreme Home Makeover is intrested in remodeling it so he can be more independant. An online petition has been started to show support and get the family on the show.
For 7-year-old Jake Grys, daily activities like going downstairs or sleeping in a regular bed are impossible tasks because falling will mean more broken bones.
Jake suffers from a rare disease called osteogenesis imperfecta, also known as brittle bone disorder, but his family is seeking help from the TV show "Extreme Makeover: Home Edition," to help make their home more accessible.
"I break," said the boy with an ever-present smile and an eager personality.
"His bones are kind of like Styrofoam," said his mother, Jean Grys, who has started an online petition she hopes will lead to an appearance on the well-known ABC show.
The show specializes in building new homes for families in need or that are in unique situations like the Grys family.
Jake’s brittle bones are caused by a lack of collagen, and he breaks about two to four bones a month, each one needing to be wrapped with a special plaster. In addition to the bone disorder, he also suffers from dwarfism and is just less than 30 inches tall. He weighs about 25 pounds and is about the size of an 18-month-old baby, his mother said.
Jake is unable to walk and moves around his Pekin home by pivoting and scooting across the floor, or with help from an electric device on wheels called a Go Bot.
Being unable to reach door knobs, kitchen counters, the toilet, shower or bathroom sink, Jake is dependant on his mother and father and brothers and sisters to help him along.
"We want a safe house for our son," Jean Grys said.
The couple has provided foster care to 250 children over the past 25 years and did the same for Jake when he left the hospital as a baby. They officially adopted him when he was 3.
The medical information Jean Grys read said children born with osteogenesis imperfecta usually don’t live past the first year, but Jake beat the odds.
Angie DeLost, Jake’s occupational therapist at Easter Seals in Peoria, suggested Jean Grys try to make it on the show.
DeLost said Jake excelled in everything he could do on his own, but he will never be able to overcome the challenges the house presents.
"I said, ‘I don’t know what else I can do besides build you a new home,’" DeLost told the family, and that’s when the idea clicked.
DeLost and the family created a video tape of Jake and the problems at the house and sent it to the show two years ago. The family has been contacted by producers, but they are not in the running yet.
That’s why they created an online petition for community support, which is one of the requirements to be on the show.
"You have to prove you have the support to pull off the project," Jean Grys said.
The Web site www.gopetition.com/online/11829 allows people to electronically "sign" the petition, called "Jake’s Declaration of Independence." It had more than 6,700 signatures as of Tuesday and features pictures of the boy and a video clip.
Jake meets visitors to the home with a handshake and smile, and readily gives a tour. DeLost said despite the painful and frequent bone breaks, "I don’t think I’ve ever seen him in a bad mood."
The chance of appearing on the show and receiving the modifications would be a life-changing event for the boy, DeLost said. "This is a little boy who, if he had an accessible home, he could be independent in nearly everything."
Jake laughs with his mom and details his big dreams of having an elevator so he can visit the basement, a computer room for his love of electronics and a place in the home for a spa so he can do his water therapy exercises — preferably in his room — he said.
But, mother says she knows best.
"What he truly, truly needs is to be able to be independent."
Kevin Sampier can be reached at (309) 346-5300 or firstname.lastname@example.org.