Osteogenesis imperfecta, or brittle bone disease, is a ‘genetic disorder in which bones break easily,’ reports a National Institutes of Health website. It can also cause brittle teeth, scoliosis, hearing loss and weak muscles. Seven-year-old Jacob Grys of Pekin, Illinois, has a severe form of it.
His 50-year-old mother Jeannie regularly reads this column in the Pekin Daily Times.
‘We’ve been foster parents for 25 years,’ said Jeannie in a telephone interview, referring to herself and husband Steve. ‘We’ve had 250 kids over the years (as foster parents) and Jacob was just one of a long line of children coming into our home.’
Currently, besides four grown-up biological children, the Gryses have three adopted children with disabilities, including Jacob. Steve is a special education teacher and Jeannie is a former special education aide. They began foster parenting after seeing so many children with disabilities in need.
As for Jacob, besides having brittle bone disease, he’s only about thirty inches tall. He uses an electric wheelchair to get around in public and he crawls at home. In elementary school he is an excellent reader.
Said Jeannie, ‘Jacob is like a breath of fresh air because he’s so funny. His personality fills the room. As for being extremely small with brittle bones, he doesn’t know any other way of life. He doesn’t realize yet that everybody else doesn’t hurt all the time, and he’s just starting to realize that everybody doesn’t break their bones all the time.’
Given his condition and small size, a tumble off of a bed could kill him. For his own safety he sleeps on the floor in a modified dog bed. ‘He knows he’s always going to be teeny-tiny,’ said Jeannie. ‘And he’s very good at getting others to meet his needs.’
Due to his short stature, at present Jacob isn’t independently able to do basic life activities such as opening doors and refrigerators or getting onto toilets or inside bathtubs. ‘He could be totally independent by [our making the house accessible],’ said Jeannie, ‘and it’s our charge to find ways to help him do things himself.’