'Miracle child,' driven by 'inner light,' defies odds

Henry Ready, 5, looks at Christmas tree decorations with his mom, Kara, at the Special Learning Center. Henry was diagnosed with lissencephaly and Walker-Warburg syndrome, which causes severe delays in growth and development, but he has surpassed many of the doctors expectations.

Editor's note: For several charitable organizations, the holiday season - like the rest of the year - is a time to help those dealing with some of life's toughest problems and providing solutions to those problems. In the week leading up to Christmas, the News Tribune is using its "A Christmas Wish" series to showcase individuals whose lives were impacted by United Way of Central Missouri partner agencies and donors.

Henry Ready is 5.

But his parents - and his teachers at the Special Learning Center - consider him a "miracle" child.

"According to the doctors, he shouldn't (still) be alive," Henry's father, Luke Ready, 35, told the News Tribune. "They told us when he got his diagnosis, most kids don't live past the age of 2.

"If they do, they live until they're about 10 - but they're usually on vents and basically a vegetable from 2 on."

Henry has both lissencephaly and Walker-Warburg syndrome - two rare disorders that cause severe delays in all areas of growth and development.

His mother, Kara Ready, 34, said Walker-Warburg syndrome "is a form of muscular dystrophy, so there is a chance for regression once he does gain."

The lissencephaly diagnosis came when he was 13 months old, and after genetics testing, Walker-Warburg syndrome was identified about a year ago.

"It was some kind of a random gene-mutation," Kara said, that occurred in about the 20th week of her pregnancy.

But, while developmentally delayed for someone his age, Henry is anything but a "vegetable."

"He talks," Kara said. "He walks with a walker and is starting to walk, a little bit, independently. So, they always tell us at the doctor's appointments, 'He can do what he can do.'"

That includes learning to ride a bike, his father said.

Lisa Borgmeyer, a physical therapist with 12 years of experience, said the challenge of working with Henry is "knowing how hard to push. He's one in a million - there's never been a kiddo like this, with this diagnosis, that still is doing as well as he is.

"So, it's even challenging to know what to expect and to know exactly how hard we should push for it."

But Henry doesn't give up, she said.

"Starting in October, he started taking independent steps," Borgmeyer noted. "At one point, he took up to 120 independent steps, which I honestly didn't think I would ever see."

Terri Brune has been an occupational therapist for nearly 25 years.

She said Henry seems driven by an "inner light" that helps him push to do something even when his body isn't trained to do it.

Getting him to develop the finer motor skills is her biggest challenge.

"He wants to be able to do the things the kids his age are doing," she said. "But that is much harder for him to do."

Missouri's "First Steps" program referred the family to the Special Learning Center when Henry was about 8 months old.

Special Learning Center Director Debbie Hamler has been working with the agency for 35 years.

"It was formed by parents to help their children with disabilities," she said. "It has grown to serve over 600 children a year. I think early intervention is key to helping children to grow up, develop and to be the best they can possibly be.

"So, our mission in life is to help every child attain their maximum potential, whatever that is, by us providing occupational, physical, speech, developmental therapy, parents' support - all those things that are needed to help a child be the best they can, and to find their niche in life."

The center operates with some funds paid by the parents, some funds paid by other agencies for services provided - and with a lot of funds provided by the United Way of Central Missouri.

"We have a lot of support from our community," Hamler said, "very generous people who give donations."

Henry has special ed preschool classes in the morning, then stays as part of the center's "Crayon Kids" daycare program in the afternoon - so his therapists work with him throughout the day.

He'll begin attending the Blair Oaks Elementary School in the summer.

Luke said: "They told us that we can push him really hard - and he might live less (time). Or don't push him, and he lives longer.

"We both decided that we want to push him as hard as we can, and hope he has a better (quality of) life for as long as he can."

When a reporter and photographers visited with Henry at the Special Learning Center recently, he was engaged in playing with a toy car and a truck.

He was concerned when his mother left the room briefly and was excited when she returned.

When he first saw the photographer and her camera - his smile lit up the whole area.

And when classmates headed out the door for a brief field trip, Henry insisted on joining them.

Borgmeyer said: "Henry is the kiddo that, whenever you walk down the hallway, it will take Henry 30 minutes to walk down the hallway - not because he's physically slowed, but because he has to say 'Hi' to everybody. And you can't help but want to say, 'Hey, Henry!'"

Both therapists said Henry is very social and loves people - and has a huge curiosity about things that are going on around him.

One of the unknowns, Kara said, is Henry's heart.

"We don't know about the condition of his heart," she said, "because none of the other kids have ever survived that long."

Living with a child with special needs has been hard - sometimes.

"His therapists have become our therapists, as well," Kara said, "and kind of, reminding us that Henry will tell us whenever he can do what he can do. And not to worry too much about the big picture."

Six months ago, little sister, Rose, was born two months early.