Posted: May 13, 2011 11:41 PM by Dr. Anya Winslow
Updated: May 14, 2011 8:32 PM
Justin Peck was born totally normal and healthy to proud parents Cory Peck and Cheri Whobrey in September 2004.
"He reached all his childhood milestones at or before the average time. He was actually walking at ten months," says a smiling Whobrey.
After his third birthday, things changed rapidly. He had his first seizure right before he turned three. Then another one struck. Doctors ran every test possible, but found nothing. They believed it to be a seizure disorder.
By three-and-a-half he started showing other signs. "He started tripping easily, stumbling over words, sometimes in the middle of talking forgetting a word, walking funny, his body was ataxic. When doctors saw that, they knew it was more than a seizure," says Whobrey.
Then, in June of 2008, the unimaginable happened. Doctors told them that their son had Infantile Batten Disease, and he would die and they could do nothing for him.
"Within six months [of his diagnosis] he could no longer walk on his own...he lost his ability to talk. He probably got down to thirty words and his sight was going," says an almost teary-eyed Whobrey.
Keeping her composure, but wiping away a tear, Whobrey emotionally adds, "It's as if he went backwards. The latest skills that he learned, were the first ones he lost...I said at the beginning of this, that if you're going to take away my child, you know, just take my child, but to just take him in bits and pieces is torture to all of us. But every day I get with Justin, I pray and I wish for one more."
Batten Disease typically manifests between 5 and 10 years of age. It is a fatal and inherited disorder of the nervous system. It is a type of neurodegenerative disorder and involves an abnormal build-up of lipofuscin, a type of brownish fatty pigment particles, in the brain. As the months and years pass, those inflicted with the disease lose their sight, among many other motor functions.
To help keep Justin strong for as long as possible, his parents enrolled their son in a therapeutic riding class at the Mark Reyner Stables.
The stables offer both therapeutic riding and hippotherapy classes. "The movement of the horse is used to help facilitate posture, alignment, mobility, improve balance and strength, endurance," says occupational therapist and hippotherapy-certified Amanda DeLizzio.
Physical, occupational and speech therapists use the horse as a tool to build these skills to help increase their patients' core strength and improve their overall functionality.
Patients with a wide range of physical, cognitive, emotional, or behavioral and learning challenges may benefit from this form of therapy. The multidimensional movement of the horse, the horse's gait and the rhythm of movement are similar to human movement pattern.
"Every horse has a different movement pattern to them. Some horses have shorter legs and shorter torsos, with a choppier movement. Other horses have medium build and medium stride...then you have the big horses that have big, huge strides and big movements," says DeLizzio.
The patient's condition, size, and strength, will determine which type of horse they will be paired with. Some patients with weak spots in their neck, or if they take medications that make them sensitive to the sun, or if they have open sores from surgery or pressure sores may not be potential candidates. Otherwise, it appears that almost anyone can try this therapy.
As for Justin, he was paired with a special seventeen-year-old horse named Cutter.
The two have been riding for almost three years, but something amazing happened, which no one predicted. From the beginning, Cutter could sense when Justin was about to have a seizure.
"When Justin's about to have a seizure, he'll stop and he won't move and he won't do anything, and then about thirty seconds later, Justin starts having a little seizure," says Justin's riding instructor, Jamie Harrison, who is certified by the North American Riding for the Handicapped Association (NARHA).
Cutter can also sense the coming of a seizure in other riders as well, but as Harrison adds, "Cutter is different horse when Justin's on his back."
Although Justin's body continues to deteriorate, his parents bring him to ride twice a week, and they see a hint of excitement in their son.
"When we open the [car] door, and he can smell this place, he's very excited. We have to get him out of his car seat. He's kicking his legs to get out himself," says a smiling Whobrey. When they could not come and ride because of bad weather, "He was always very sad," adds Whobrey.
Two weeks ago, the Indoor Therapeutic Riding Center at the Mark Reyner Stables had their grand opening. Now, all the children can come and ride no matter what the weather does outside.
The indoor facility, Justin's Arena, was named in honor of Justin.
"We felt so honored. Justin has not had a very long time to do things with his life. It was such an honor to think that something he really loved, that meant this much to him, that obviously he's given back to the people that work with him," Whobrey pauses and says, "They're feeling it, too." She lets out a big smile and finishes, "And we'll have it here forever."
Currently, there is no cure or treatment for the disease, but there are some clinical trials available. Since this disease affects an extremely small number of people (2-4 in 100,000 births in the United States*), more research and funding is needed.
To raise awareness and funding for research, one man is running across the country to help. He is dedicating each day of his run to various people who suffer from the disease. He is dedicating two days of his run to Justin - May 19th and 20th. Click here to learn more about Noah Coughlan, the runner, and how you can help.
Click here to learn more about Batten Disease and how you can help to fund research for this rare and under-researched disease.
Click here if you would like to donate in Justin's honor.
Note: Some insurance companies cover the costs for hippotherpy.
*Number attained from the Batten Disease Support & Research Association, as well as the National Institute of Neurological Disorders and Stroke.