A Dream of a Better Future
4/9/2000
The gentle brushes of watercolor reveal a long, two-story farmhouse of wood and stone, surrounded by lush green trees.
In the foreground, a young boy and girl, accompanied by their parents, raise their arms as they scamper toward two brown horses grazing inside a corral.
It’s Lou Castriota, Jr.’s dream to make that watercolor reality.
At Leg Up Farm, children and young adults with special needs will saddle up on horses and feel what it’s like to have a 1,000-pound animal at the reins. They will stretch their senses in a room filled with smooth, rough, wet and crisp. They will have a team of therapists working together to develop a rehabilitative program, along with the close support of their family.
Leg Up Farm will be for every child, no matter what their financial situation, and catch the kids who, for various reasons, fall through the cracks of other therapy programs.
Three years have gone by since Castriota developed his dream, and in that time, he’s conducted brainstorming sessions with health care experts, formed a board of directors and applied for a grant.
But he’s also suffered several setbacks.
He’s been turned down three times in the last year for a grant through the state Department of Community and Economic Development, despite support from virtually every York County politician. His search for a donation of a farm or even land to build a farm has so far been unsuccessful.
“Once the awareness is created in the community, my hope is that someone would come forward with a piece of property that they would want to see something special happen to,” he said. “It’s not going to look like a hospital, it’s not going to look like a school, it’s going to look like a farm. The idea is the children want to come to our facility because it’s fun and there’s a lot of neat things there.”
Steeling his tenacity is his daughter, 4-year-old Brooke, who was diagnosed with mitochondrial disease about three years ago. Each day, the little girl struggles to talk but only makes sounds, tries to walk straight, but bumps into things.
Lowell Briggs, 45, whose daughter Amber, 12, has Down Syndrome, calls Leg Up Farm “a marvelous idea.”
“This can truly be a community experience,” said Briggs. “It’s so invigorating to realize that Lou Castriota is standing up and saying, ‘I’ve got an idea, who will join me in this vision to help children?’ It took a determined father who saw a need and realized that the time was now to make it a reality.”
Briggs, a past president of the S. June Smith Center in Lancaster, a non-profit center for children with developmental delays, said he would bring Amber to Leg Up Farm “in a heartbeat.”
Little girl, big heart: Brooke Castriota and her 2-year-old sister, Lauren, chase each other up and down the long hallway in the family’s log-cabin-styled home. Brooke runs and squeals with delight, running straight, not bumping into anything.
But once she stops running, she has difficulty not bumping into things directly in front of her and keeping her balance.
She opens her mouth, wanting to talk.
“Da, da, da, da, da,” she repeats.
She knows a few signs – how to say “I want,” “more” and “eat”.
She kisses by gently placing her nose against a person’s cheek and she has a vise-like grip.
Her long brown hair is pulled back in a braided ponytail. She wears plaid blue and green shorts, a white shirt and white tights.
Castriota, 29, and his wife, Laurie, 30, live in Shrewsbury Township with Brooke, Lauren, and Toby, 8, and Olivia, 9. Next to the house is a barn, housing six horses. Castriota is an account executive at Fox 43 in York and his wife has an equine therapy business, where she rehabilitates all types of horses.
Castriota, who grew up around horses, wanted to start a therapeutic riding program about three years ago.
“They (horses) help to improve, from a therapy standpoint, kids’ balance and posture,” Castriota said. “The movement of the horse also acts as a therapy for children. Controlling a large animal like that helps to improve their self-esteem.”
Six months after he began his planning, Brooke was diagnosed with mitochondrial disease, a metabolic disorder causing both cognitive (having to do with the brain) and motor (having to do with the body) delays.
“From talking with other parents who have children with disabilities … the project evolved from just the horse riding to a complete therapy and rehabilitation center for children with special needs,” Castriota said.
Occupational therapist Margaret Bogovic worked with Brooke in an early intervention program. Once she reached age 3, she was no longer eligible for early intervention, although Bogovic continued the occupational therapy privately.
“She responded somewhat, but was not making a tremendous amount of progress,” Bogovic said.
Then she had an idea. Why not put Brooke in a pool and see what happened?
Using weights and floatation devices, Bogovic found Brooke could follow directions much better in the water than she could on land.
“She seemed to be more alive in the pool,” Bogovic said. “She would try to talk more.”
Eventually, Brooke carried the skills she learned in the pool over to land, she said.
Considering Brooke is only 4 and is receiving therapy, the question remains: Will she ever have a “normal” life?
“I can’t tell you what lies ahead for Brooke,” Bogovic said. “I can tell you that the type of diagnosis Brooke has, I don’t think there’s been enough longevity, the diagnosis hasn’t been around long enough.”
“I can tell you I’ve seen tremendous change with her in the last year, she’s a totally different child,” Bogovic continued. “With her, I never stop marveling.”
Like the time Bogovic put Brooke in the pool and Brooke immediately shook her head and said “no,” a word Brooke had never uttered.
Both Lou and Laurie Castriota remain upbeat about Brooke’s progress and her future.
“We just take it one day at a time,” Laurie said. “She started with one sign, now she can do at least three consistently. She tries so hard.”
Said Lou, “I hope there’s a chance for a full recovery – doctors are usually not that positive, but they have said that she should be able to improve to speak.”
Bridging the gap: Leg Up Farm plans to bridge a gap in therapy and rehabilitative services in the county.
The county provides early intervention services for children to age three, then their care is turned over to the educational system if their disability affects their ability to learn.
Bogovic gave the example of a patient of hers, a 7-year-old boy who’s holding his own in school, but has serious organizational, emotional and behavioral problems at home.
“Here’s a perfect example of a kid who’s slipping through the system,” she said.
In addition, children must have a 25 percent delay to qualify for services, meaning their aptitude for learning is 25 percent slower compared to an average child the same age.
“I have a lot of children who don’t qualify, they come right under the 25 percent delay, but they have delays that are significant that need to be addressed,” Bogovic said.
Castriota said he would turn no one away from Leg Up Farm.
We’ll accept medical assistance, but we want to set up some type of sliding-scale payment, based on income,” he said.
Land and grants: About two weeks ago, the state Department of Community and Economic Development released the latest recipients for its Community Revitalization grants. Leg Up Farm was not among them.
Castriota had applied for the grant twice before; this time he submitted support letters from York politicians to Samuel McCullough, secretary for the DCED.
“The requested funding is critical to the success of this greatly needed service,” wrote York County’s three commissioners, who said “the concept for Leg Up Farm will become a national benchmark for pediatric therapy, strengthening Pennsylvania’s position as a leader in innovative ideas and applications.”
There are also letters from U.S. Rep. William F. Goodling, R-Seven Valleys, state representatives Todd Platts, R-Springettsbury, Stanley Saylor, R-Windsor Township and Ronald Miller, R-Jacobus, along with state Sen. Mike Waugh, R-Shrewsbury Twp., expressing similar views.
But the letters apparently didn’t help.
“It does not discourage me,” he said. “It’s a long process and a long-term project. I’ll just keep moving forward.”
Castriota said he now will bombard the DCED with letters, this time around from parents of children with disabilities.
Neuhard said that Castriota’s grant application is good for one more round of grants, to be announced in May. After that, if they don’t receive one, they have to reapply, she said.
Another hurdle for Castriota is finding a home for Leg Up Farm.
“The best scenario for us would be a land donation or a partial donation of land, where they donate part of it and we purchase part of it,” Castriota said.
A 100-acre farm would be perfect, with five acres devoted to buildings and the other 95 devoted to pasture, crops, hiking trails and woodland.
“We want to make the facility as convenient as possible in York County, or close to I-83,” Castriota said.
Perhaps most intimidating is the $9.12 million Castriota said is necessary to get Leg Up Farm up and running, including the site.
“For what the facility is going to include, I don’t think it’s an astronomical figure,” Castriota said.
Epilogue: Briggs sees several parallels between Leg Up Farm and the S. June Smith Center, which also got its start from one person’s vision, and encourages family involvement with patients, as Leg Up Farm plans to do.
Leg Up Farm has the potential to unite families in support of one another, Briggs said.
“Leg Up Farm, they can be there at the hospital (just like the Smith Center has done) and say, ‘While this may be a dark time for you, there are services that are all under one roof in a rural setting, here is a collection of families who have been where you are and they succeeded in living a typical life,’” Briggs said.
A decade ago, Briggs was sitting with a group of fathers at the Smith Center. It was called Dad’s Day, where fathers would work with their children and then discuss their feelings. Amber was not yet 2 and she was facing open-heart surgery. As Briggs told the others about the upcoming surgery, tears began to stream down his face.
Another man in the group spoke up.
“My son went through the same thing and look at him,” he said as he gazed through a glass partition into another room where therapists worked with his son.
It’s Briggs hope that maybe someday he could be the person to say, “Hey, it’s going to be all right.”
Maybe the place will be Leg Up Farm.
By TED CZECH, The York Dispatch/Sunday News