Hold the presses!

If you live in the Chino area, you should really pick up the Chino Champion! Gavin made the front page. I look a little jolted, because the only way Gavin is really happy and not doing the eye pressing, is when he's standing and jumping! Troy and Landon looked straight and smiled continously for about 30 seconds so we could get a good pic of Gavin. It was pretty funny.

It was really nicely done, thank you Chino Champion!

Next Saturday’s Chino Hills Challenge 5K run/walk at Chino Hills High School will have special meaning for the Stevens family of Chino. Gavin Stevens, 7-month-old son of Troy and Jennifer Stevens and younger brother of 5-year-old Landon, will serve as grand marshal of the event, three months after Gavin was found to likely have a condition that is slowly taking his sight.

The Chino Hills Sheriff’s Department, which hosts the annual 5K run/walk, said $5 from all participants who mention Gavin Stevens on their registration form will go toward a fund for the boy. That money could be used for Gavin’s medical costs, future schooling, Braille Institute classes and travel expenses, Mrs. Stevens said.

The Chino Hills Challenge is scheduled for 7:30 a.m. at Chino Hills High School, 16150 Pomona Rincon Road. Registration forms are available at pacersrunningclub.comoractive.com.
No cure is known for Gavin’s condition, Leber congenital amaurosis (LCA), Mrs. Stevens said. “It’s predominately a blindness that is present at birth. There are different variations and degrees of LCA. We think he has a pretty severe case in both eyes,” Mrs. Stevens said.

Doctors noticed nothing unusual about Gavin’s eyes the day he was born, but Mrs. Stevens said she knew something wasn’t right. “She didn’t know what it was,” Mr. Stevens said. “There wasn’t anything physically wrong with his eyes, just a mother’s intuition. I kind of told her she was crazy and on heavy morphine and just to relax.”

Two months later, she noticed Gavin wasn’t tracking objects with his eyes as he should, but the child passed every test the doctors administered. “A doctor told us some children develop a little later than others, but bring him back in four months and we’ll check him again,” Mrs. Stevens said.

After three months, Gavin’s parent could no longer wait and took him back to the doctor. There, the doctor noticed additional symptoms, such as difficulty focusing. They were sent to a pediatric specialist, who mentioned the possibility of LCA.“I was in complete tears after hearing the news,” Mrs. Stevens said. “We didn’t know what to do or where to go at first.”

LCAis a hereditary condition, but the Stevens family knows of no previous cases, Mr. Stevens said.“ This is completely new to us, so we are kind of taken back a little bit and now we are just trying to learn about it,” he said.

Doctors said either one parent carries the gene and it manifested itself in a mutated form — a 1 in 800,000 chance— or both parents are carriers of the recessive gene and it matched up, Mrs. Stevens said.

“Right now, we are still unsure how exactly Gavin got it,” she added. The family is currently working with Children’s Hospital in Los Angeles, but their medical insurance will not approve an Electro Retina Gram (ERG),which would confirm if Gavin has LCA. “It was not approved the day before Gavin was to have the procedure,” Mrs. Stevens said.

An ERG, similar to an EKG of the heart but for the eye, can get deep into the eye, take pictures, test light stimulus and see what the brain can see. “By looking at him more in depth, the doctor would be able to tell if he has LCA. If so, the family would have to have blood tests done to see where the gene lies,” Mrs. Stevens said.

Eight people worldwide diagnosed with LCA have been cured through gene therapy. “That’s what we are trying to push for. I personally believe awareness is the key to funding and we’re active fundraisers for the Foundation Fighting Blindness. They have provided a lot of funding toward these clinical trial studies,” Mrs.Stevens said.

Troy and Jennifer Stevens are lifelong residents of Chino. Mr. Stevens, 32, is a 1995 graduate of Don Lugo High School. Mrs. Stevens, 34, is a1993 Chino High School graduate.

Last year, they registered Landon to play baseball with Chino National Little League. He wears No. 2 for the T-ball Pirates. Chino National Little League board member Mark Higgins and his wife M.J., both sheriff’s deputies in Chino Hills and head organizers of the Chino Hills Challenge, heard of Gavin’s condition and wanted to help.

“We are really grateful to Chino National being so kind. This is our first year with the league,” Mr. Stevens said. Landon has also been a big help to his little brother, the parents’said. “He’s really good with him. From day one, we told him, if you talk to him, just get close,” Mr. Stevens said. “He’s always rolling over,” Landon said with a big smile.

Mr. Stevens said Gavin is functioning as a 7-month-old should, including crawling. “We’re making sure his development stays on track. His hearing is fine and all other motor skills are fine,” he said. Mrs. Stevens said the family is already learning to read Braille — Gavin too.

“We want to make sure he’s not defined by his disability, that’s a part of who he is,” Mrs. Stevens said. “We’re going to do all of life experiences and he’ll be a part of everything. His way of seeing everything will be through his hands.”