Into the light

| 17 May 2012 | 02:31

WEST MILFORD — Ty Rockey was born into a world of darkness and shadows. At just two months of age, a diagnosis of Leber Congenital Amaurosis (LCA) was suggested and months of further testing confirmed it. Kelly and Chris Rockey’s first born child was blind.

The young West Milford parents had noticed something different about Ty’s eyes; he wasn’t making eye contact and had developed nystagmus, roving eye movements, both indicative of LCA.

What is LCA? LCA occurs in 2 to 3 per 100,000 newborns and is one of the most common causes of blindness in children. The disorder primarily affects the retina, the tissue that detects light and color.

There are at least 12 different types of LCA, Ty has LCA1. It’s an inherited disorder where both parents have one gene for the disease and one normal gene. Each of their children has a 25 percent chance of inheriting the two LCA genes, resulting in LCA blindness. Currently there is no testing to determine who is a carrier.

The Rockeys have since had another child, four-year old Allie, who is blessed with normal vision.

“We are both recessive carriers and it was never in our families before. With Allie, we got lucky,” Kelly said. “Ty can only see a little light and a little bit of shapes and shadows.”

Ty is now a seven-year-old first grader at Maple Road School. He’s working at grade level, learning Braille and has a district aide by his side throughout the school day. He’s an upbeat kid who wants to be independent but he sometimes runs up against difficulties.

“He struggles socially. Sometimes the kids take off and run and he doesn’t know they’re gone," said his mother. "His school work and homework are a lot harder for him, everything is in Braille.” But he’s a trooper.

He loves to jump on his trampoline, ride his bike and play in the great outdoors. He’s very active, like any other kid his age, and he and his sister are best friends.

“She holds his hand and takes him where he wants to go,” Kelly said.

Music is a key There’s another thing Ty loves and that’s music. He started playing guitar when he was three years old and last year he decided he’d like to try singing. To that end, the Rockeys brought him to Deborah “Zuke” Smith, owner of zuketunes LLC.

Smith, a neighbor of the Rockeys, is an artist and vocal coach with a big heart and a strong sense of community. She encourages her students to share their gifts and when Ty came to her as a student she lined him up with Emma Ferony, one of her junior vocal coaches. It was a match made in heaven. Emma has been known to piggy-back Ty to his lessons and Ty is pretty sure he wants to marry Emma when he grows up. Ty’s singing is joyful.

“You can tell that singing moves every atom in his body. He just wants to let go, let it out and share it. He’s a beacon for the rest of us,” Smith said.

"There's a cure on the horizon"

There’s another beacon on the horizon - this one for Ty and his family. In a few weeks Ty will be going to Philadelphia to meet with Dr. Samuel Jacobson at the Scheie Eye Institute, the Department of Ophthalmology for the University of Pennsylvania Health System and University of Pennsylvania School of Medicine. Dr. Jacobson is about to start human clinical trials on LCA1, using gene therapy to replace a missing protein, hopefully restoring vision in those afflicted with LCA1. Ty will be tested to see if he is a candidate for the therapy.

“We are so close to a cure right now. We want to help get the trials off the ground," said Kelly Rockey. "This is pioneering research and it’s exciting that we’ve come this far in seven years. There’s a cure on the horizon.”

As with all research, funding is the key that can open the doors. Deborah Smith and the Rockeys want to help shape that key.

Smith has corralled 30 of her students, including Ty, to get together for an afternoon of musical entertainment, a sure-fire day of fun with all proceeds going directly to Dr. Jacobson’s research. The event, to be held at the West Milford Elks lodge on Sunday, May 20, will help raise funds as well as awareness of LCA.

The Rockey family eagerly awaits their trip to Philadelphia. At that time they will personally present a check to the doctor and every dollar raised will be a blessing. From the West Milford community, directly into the hands of Jacobson and the researchers; you can almost feel the connection and the hope.