Life Connected

Family and 8-year-old with Degenerative Disease Find Joy and Assistance in Community Connections

Maintaining mobility is an ongoing challenge

NBCUniversal, Inc.

In his eight years, Billy Ojeda has taken the helm of a fire engine as an honorary firefighter, piloted a 747 flight simulator, and flown cross country more than 120 times.

Certainly an eventful childhood -- but also one beset with a degenerative disease.

"It's not very fun," Billy says matter-of-factly.

And yet he and his family, connected with a helfpul community, find joy in the journey.

Billy was diagnosed at age 4 with muscular dystrophy, the severe Duchenne type. His muscles -- all of them -- are gradually decomposing. There is of yet no cure.

"At first you want not to get up, to hide, to pretend," recalled his mother Steffi Ojeda. "But then you have to face reality to give Billy his best life."

Not far away on the couch in the living room of the family's Menifee home, Billy was giggling as his dad was tickling.

"That was the turning point for us, seeing he was happy," said Chris Ojeda. It gave us the ability to step out and choose peace and joy."

A school teacher, Steffi became the family's sole breadwinner when Chris suspended his career in IT to deal with the time Duchenne MD demands. There are frequent full days of medical appointments, and the multiple day-trips to Florida for a medical trial that explain those 120 cross country flights.

Billy can stand for brief periods and even walk short distances. But rather than helping, too much exercise can actually speed muscle degeneration.

There was a family discussion about whether it would be worthwhile -- or even feasible -- for Billy to continue going to school. Of course, sisters Ily and Abby Rose do, and Billy insisted on going with them.

Reality is Billy is increasingly reliant on assistance, from his sisters and parents; from teachers and staff at Calvary Murrieta Christian Schools; from the machines that help him get around. They include the lift that carries him up and down the stairwell at home, and a power wheelchair that was a gift from a donor.

"That has been life-changing for him," said Chris Ojeda.

New connections have been a source of blessings, including a visit to Menifee's Fire Station 76. That came about after the publisher of Menifee 24/7, Doug Spoon, learned Billy shared the dream of many a child of someday becoming a firefighter. Spoon reached out to the battalion chief, Menifee's mayor and other city officials, and they answered the call to welcome Billy. Firefighters brought him his own uniform and showed him their firefighting tools.

Billy "was so quiet at first," observed Spoon. "And then his dad told me he couldn't stop talking about it."

The Ojedas could not help but make an impression on Delta Airlines with all their trips to Florida, with connections through Delta's Atlanta hub. For one trip, Delta asked the Ojedas to book a longer layover, to make time for a surprise gift of royal treatment, with a party and a visit to Delta's 747 flight simulator, where every member of the Ojeda family got a chance to take the controls.

As the Ojedas make more community connections, they find themselves getting more requests from people asking what they can do to help.

"I was so touched and moved by his story," said Temecula Valley real estate agent Cindee Williams. She learned of the the family's current challenge -- replacing their 13-year-old Nissan Pathfinder and its over-loaded hitch with a minivan with a built-in lift for Billy's battery powered wheelchair. The Jett Foundation of Massachusetts has pledged to cover half the cost, but the Ojedas need to raise the remainder, about $33,000.

As it so happens, Cindee's mother in law Linda Williams is the proprietor of the popular Richie's Diner in neighboring Murrieta, and she has offered to host a fundraiser.

"When you meet him, you want to do something for him," said Linda
Williams.

Her daughter-in-law has no doubt it will boost the fundraising effort for Billy.

"It needs to expand and grow," she said. "He's in such an amazing community, I knew people would take hold of it and go with it."

The Ojedas are almost overwhelmed by the response.

"When there's so much kindness and generosity, and from people you barely know or have never met, it's very incredible," said Chris Ojeda.

The Ojedas recently traveled back east again in the hope Billy will be included in another medical trial. They hope for a research breakthrough that could stop Duchenne's advance, if not reverse it.

But they focus on each day as it comes.

"It's not always easy," Chris acknowledged candidly. "But most of the time we find joy and time to make memories."

The Ojeda family has reserved an online address for Billy, www.hope4billy.com, which now links to his page at the Jett Foundation.

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