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Billy Ojeda, Duchenne Muscular Dystrophy patient, enters clinical trials, bringing hope to Menifee family

 

Last updated 12/22/2017 at Noon

Duchenne Muscular Dystrophy patient, young Billy Ojeda, with his caring family stand by the Christmas tree in their Menifee home. Billy, 6, rests in the arms of his father, Chris Ojeda, mother Stephanie, sister Ily, 8, and shy Abby Rose. Tony Ault photo

Little Billy Ojeda sat in the pilot seat of a huge Boeing 747 holding his soft Delta Airlines plush fascinated by all the dials and meters. It was a once in a lifetime event for this 6-year-old, even more so with the whole Ojeda family from Menifee soon to arrive in Florida on the same plane for visit the wonderous colorful Disney World.

Yet, this still seemingly excited boy, son of Chris and Stephanie Ojeda, now a veteran of over three dozen cross country flights, is not always smiling. With the excitement of flying slowly waning, Little Billy sometimes cries when he knows during those trips he will be seeing hosts of doctors and nurses.

He will be hours undergoing probing, testing and questioning by doctors and researchers trying to determine how he is faring with his rare, incurable Duchenne Muscular Dystrophy. DMD, a slowly debilitating and terminal disease that afflicts little Billy, is slowly taking away much of his muscle tissue from bone and organs. His future with DMD is not bright since until a cure or means to slow the disease is found, he will eventually face life in a wheelchair, organ failure and eventually death before he reaches his 20s.

Even with this prognosis Chris, an unemployed information technologist, and Stephanie, a local high school teacher, remain ever so hopeful that Little Billy, who is currently in a clinical trial, will benefit and live a longer and productive life.

One clinical trial that Billy's family hopes he is accepted for in the distant future is based upon gene therapy that could possibly slow the progress of the disease. Dr. Jerry R. Mendell, one of the nation’s foremost neurologists, is conducting the clinical trials the family hopes Billy is selected for participate because of his very rare DMD, Chris said.

“We are blessed to have him,” said Chris. “If one day he gets into Dr. Mendell's trials it could buy Billy 10 or 15 more years. Slow things down. Maybe he can walk until he is 18. This is a huge thing. He is leading the charge in this clinical trial.”

“It could be a game changer,” said Stephanie.

Currently Billy seems like any active 6-year-old, running around his house playing with toys, having fun and sometimes even wrestling with his two sisters, Ily, 8 and Abigale Rose, 2. Jet lag from the family’s most recent trip to Columbus, Ohio, at the Nationwide Children’s Hospital, last week during this reporters’ visit, seems to have worn off as Billy happily searches through his gifts from Delta Airlines underneath the mantlepiece near the family Christmas tree.

Then just as suddenly Billy says to his dad after crawling up in his lap, “Can we go upstairs now.” He was tired and at this time is unable to climb the steps to his second story bedroom without being carried. Once there, Chris or Stephanie, if they haven’t done it earlier in the day, will help Billy stretch and exercise his arms and legs for almost an hour to keep his still growing muscles from deteriorating.

DMD is created by a certain mutated gene called the dystrophin gene found in the X (male) chromosome. While other chromosomes in the body (Y chromosomes) can compensate in girls it is not the same for boys. In children like Billy when the muscles are overused, they continue to build and stiffen. It may look like the victim is muscular in the younger years, but the muscle (particularly the calves) stiffens and begin deteriorating. This causes pain and discomfort. Soon, disfigurement appears along with an inability to use the limbs.

Stephanie, who usually stays home when Chris, a stay at home father escorts Billy to the clinical trial sites across the country, found herself on the last flight when Billy began crying because he was missing his mother and sisters.

“I guess I will be going with him all the time now,” said Stephanie adding she is now using some of her personal time from school.

But, on the brighter side, Billy has been on a whirlwind adventure in the past six months going to visit Disney World in Orlando, Florida, with his parents and sisters, becoming discount retailer Big Lots’ poster boy for Muscular Dystrophy and receiving numerous gifts and lots of attention. Billy, now as a frequent flyer on Delta, often finds some new toys of gifts coming from the Delta staff at each airport he lands at.

Maybe he’s a little spoiled,” said Stephanie, who is thankful for the opportunities.

Interestingly, Billy who received many toys from Big Lots, reportedly turned around and handed off some of the toys to other children who are afflicted with Muscular Dystrophy, hoping it would help them.

Members of the Menifee and Murrieta communities and local churches have helped the family with some of the expenses for the family’s trips, medical expenses not covered by insurance and the medical trials, yet a major expense still looms for the Ojeda’s and little Billy.

A tired boy, Billy Ojeda, a patient with the debilitating disease Duchenne Muscular Dystrophy, seeks refuge and rest in the arms of his father Chris Ojeda while little sister Abby Rose, but a blur, jumps off the sofa. Tony Ault photo

Using their own savings and credit the family is in the process of having an electric chair lift installed by Pacific Mobility for Billy that will automatically carry him up the two flights of stairs to his upstairs bedroom. The chair lift has been discounted by Pacific Mobility, but still is a high cost for installation and an extra cost for the chair.

“It will give him some freedom when he needs it,” Chris said. “Meanwhile, we are taking it one day at a time. We hope for gains from the clinical trials, but it is still too early.”

Chris said through the experience with Billy, even though many of dreams have been lost, they are finding many caring people who have strengthened their Christian faith and know that Billy “is God’s child” and is in his hands.

To help the Ojeda family purchase the much-needed lift for Billy, visit www.youcaring.com/littlebilly.

 

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