Rocking for a cause: Rock for Retinal Research

Ty Rockey is a regular nine year old boy - except for one thing - he has a condition known as Lebers Congenital Amaurosis Type 1 (LCA1) that has made him blind from birth.

According to his mother Kelly, there is a gene therapy procedure currently in clinical trials that is working to restore sight to others with LCA gene mutations.  The clinical trial for Ty’s gene should start within the next few months she said.

“This is something we have been hearing about since the day he was diagnosed and now we are finally at the point where they are doing it – and it is working!” Kelly said.

Through their non-profit organization, Ty’s Eyes, the Rockey family has been supporting this research with an annual concert called “Rock for Retinal Research.”

 “Before we started Rock for Retinal Research we held other fundraisers but really wanted to do something that not only was fun and family oriented but something that Ty would enjoy and look forward to every year,” Kelly said.  “We brainstormed and a concert was the natural answer. Ty loves music and we could make it an affordable and fun event for families.”

This year’s concert is this Saturday, September 6^th from 4 p.m. to 10 p.m. at the Pinecliff Lake clubhouse in West Milford, NJ (1577 Union Valley Road).  There will be live music, tricky-tray style raffle prizes and a card reader during the afternoon hours.  The suggested donation is $10 for adults and $5 for children under 12.

 “We donate every penny raised directly to researchers at the Scheie Eye Institute at UPENN who are working to start an LCA1 trial,” Kelly said.

Guests are encouraged to bring their own food and drinks.  Local eateries will also deliver to the clubhouse.

“We love holding Rock for Retinal Research, it is such a beautiful inspiring day,” Kelly said. “We are not only fighting for a cure for Ty but also celebrating him and who he is.”

This year’s band line-up includes:

4:00 Fabio and the Footlongs
5:00 Ty and his friends perform
6:00 Brian Fitzpatrick and the Band of Brothers
7:00 Emma Brooke
8:00 The Bad Dogs
9:00 Raffle winners announced
9:30 Blk and Blu

This week’s posts will tell more about Ty and some of the performers playing for Ty’s cause.

Blog Roll:

The story of Ty’s Eyes

Rocking for a cause: Rock for Retinal Research

Songs from the heart: Emma Brooke

Metal or Blues?: Fabio and the Footlongs

The Story of Ty's Eyes

Ty Rockey is nine years old and about to start the fourth grade.  Like most boys his age, he enjoys watching TV, riding his bike and playing outside with his friends.  Unlike most boys, Ty was born blind. 

Ty has Lebers Congenital Amaurosis type 1 (or LCA1), a genetic retinal disorder that can occur on one of 19 different genes, causing blindness from a very young age or birth.  

“After we got a diagnosis we were completely devastated,” Ty’s mother, Kelly said.  “We had never even met a blind person before and had no idea what to expect or what his future would be like.”

The Rockey family has since learned a lot about how blindness does not have to be a limitation.  Ty reads using braille, and uses a computer called BrailleNote.  He uses a white cane to travel independently, watches TV while his mom describes what’s happening on screen, and uses voiceover on his iPod touch.  He even plays baseball using a beeping ball.

Ty’s favorite thing to do is play outside.  He said he loves the trampoline, swinging, and going to the park.  He rides his bike, plays baseball and is on swim team. He loves playing with his little sister Allie and his friends.

“I have a lot of friends at school and in my neighborhood,” Ty said.  “I also have friends who are blind that we see every couple of years, they live all over the country.”

Ty also enjoys music and going to concerts.  He even takes singing lessons.

“I honestly don't remember having much of a reaction to his condition,” Ty’s friend and vocal instructor Emma Brooke said. “He was another kid who wanted to learn how to sing and I thought that was wonderful.”

We all have disabilities that work to our disadvantage, but Ty and the Rockey family have used their creativity and ingenuity to essentially make light of what many would consider a debilitating challenge, while at the same time fighting for a change that may one day give sight to those born with LCA through their nonprofit organization Ty’s Eyes.

 “We realized … he would have to do things differently but he will be able to do it all,” Kelly said.  “Over time he has shown us that he can and will do whatever he wanted and be just like any other little boy.”

The Rockeys are in the midst of preparing for their fifth fund raising concert for Ty’s Eyes. “Rock for Retinal Research” is a family friendly event that will be held in West Milford, NJ this Saturday, September 6^th.  To learn more about Rock for Retinal Research visit www.facebook.com/TysEyes and keep reading the Mind Key blog throughout this week.

Blog Roll:
The story of Ty’s Eyes
Rocking for a cause: Rock for Retinal Research
Songs from the heart: Emma Brooke
Metal or Blues?: Fabio and the Footlongs