Terminally ill Menifee boy becomes Fire Chief for a Day
By Doug Spoon, Editor An 8-year-old Menifee boy with a terminal muscular disease got a special treat Friday when the crew of Menifee Fire ...
http://www.menifee247.com/2020/02/terminally-ill-menifee-boy-becomes-fire-chief-for-a-day.html
By Doug Spoon, Editor
An 8-year-old Menifee boy with a terminal muscular disease got a special treat Friday when the crew of Menifee Fire Station 76 made him Fire Chief for a Day, including a tour of the station and a ride in the department's ladder truck.
Billy Ojeda suffers from Duchenne Muscular Dystrophy, the most rapidly progressing form of the muscular degeneration disease. According to his father Chris, victims of the disease may live into their teens or perhaps their 20s. He calls DMD a "muscle wasting" disease, because unlike others, Billy's body can't rebuild muscle after atrophy.
In search of the best possible treatment, Billy's parents enrolled him in a series of clinical trials. He has made 123 plane flights, primarily to Florida for treatment. He faces many more trips in the near future.
"We knew something was wrong when he wasn't able to walk," Chris Ojeda said. "He got leg braces but he didn't walk until he was almost 2. We spent the next 3 1/2 years sending him to various therapies until we finally got a diagnosis."
Although he spends much of his time in a wheelchair, Billy enjoys attending Calvary Murrieta Christian Academy and is diligent in doing his homework, Chris said. The family lives in the Heritage Lake community and met with Romoland School District officials about the services they might be able to offer, but Billy insists he wants to stay at CMCA.
"He might have to be at home eventually, but he wants to be at school," Chris said. "He wants to be with his friends and his sisters."
Chris said that although Billy's disease has been incredibly difficult for the entire family, he is amazed at Billy's positive attitude and the lessons he has taught his parents.
"When he was first diagnosed, I grieved and thought about everything I wanted my son to have growing up," Chris said. "I thought of all the things I realized he would never be able to do. But kids do better at emotionally accepting it than parents do. This is the only life he knows, and he seems to have accepted it."
Chris said Billy has always dreamed of becoming a firefighter, so Friday's visit was extra special for him. Although he arrived in his wheelchair, Billy soon got up on his feet, donned a firefighter's outfit given to him, and walked all around Station 76, which is located on Menifee Road just north of Newport Road.
The youngster was quiet at first but began to warm up to the firefighters as he learned about firefighting tools, sat in the driver's seat of a ladder truck and even took a ride around the station's parking lot. He seemed to especially enjoy hanging out inside the station living quarters and chatting with the firefighters.
The tour was given under the supervision of Battalion Chief Josh Bischof, who said that the Fire Department is a major supporter in the fight against Muscular Dystrophy. The department's annual "Fill the Boot" campaign is one of the ways it raises money to fight Muscular Dystrophy.
Menifee Mayor Bill Zimmerman, City Council members Greg August and Lesa Sobek, and City of Menifee representative Imelda Huerta joined Billy in his tour of the fire station.
Billy has qualified for a grant from the Jett Foundation, whose mission is "to extend and enrich the lives of individuals affected by Duchenne muscular dystrophy and other neuromuscular disorders," according to its website. The foundation will provide a wheelchair accessible van, but the family must come up with half the cost -- more than $32,000, Chris said.
Those wishing to make a donation may do so by visiting the Hope4Billy.com website.
For a look at Billy's visit to the fire station, see the video below:
An 8-year-old Menifee boy with a terminal muscular disease got a special treat Friday when the crew of Menifee Fire Station 76 made him Fire Chief for a Day, including a tour of the station and a ride in the department's ladder truck.
Billy Ojeda suffers from Duchenne Muscular Dystrophy, the most rapidly progressing form of the muscular degeneration disease. According to his father Chris, victims of the disease may live into their teens or perhaps their 20s. He calls DMD a "muscle wasting" disease, because unlike others, Billy's body can't rebuild muscle after atrophy.
"We knew something was wrong when he wasn't able to walk," Chris Ojeda said. "He got leg braces but he didn't walk until he was almost 2. We spent the next 3 1/2 years sending him to various therapies until we finally got a diagnosis."
Although he spends much of his time in a wheelchair, Billy enjoys attending Calvary Murrieta Christian Academy and is diligent in doing his homework, Chris said. The family lives in the Heritage Lake community and met with Romoland School District officials about the services they might be able to offer, but Billy insists he wants to stay at CMCA.
"He might have to be at home eventually, but he wants to be at school," Chris said. "He wants to be with his friends and his sisters."
Chris said that although Billy's disease has been incredibly difficult for the entire family, he is amazed at Billy's positive attitude and the lessons he has taught his parents.
"When he was first diagnosed, I grieved and thought about everything I wanted my son to have growing up," Chris said. "I thought of all the things I realized he would never be able to do. But kids do better at emotionally accepting it than parents do. This is the only life he knows, and he seems to have accepted it."
Chris said Billy has always dreamed of becoming a firefighter, so Friday's visit was extra special for him. Although he arrived in his wheelchair, Billy soon got up on his feet, donned a firefighter's outfit given to him, and walked all around Station 76, which is located on Menifee Road just north of Newport Road.
The youngster was quiet at first but began to warm up to the firefighters as he learned about firefighting tools, sat in the driver's seat of a ladder truck and even took a ride around the station's parking lot. He seemed to especially enjoy hanging out inside the station living quarters and chatting with the firefighters.
The tour was given under the supervision of Battalion Chief Josh Bischof, who said that the Fire Department is a major supporter in the fight against Muscular Dystrophy. The department's annual "Fill the Boot" campaign is one of the ways it raises money to fight Muscular Dystrophy.
Menifee Mayor Bill Zimmerman, City Council members Greg August and Lesa Sobek, and City of Menifee representative Imelda Huerta joined Billy in his tour of the fire station.
Billy has qualified for a grant from the Jett Foundation, whose mission is "to extend and enrich the lives of individuals affected by Duchenne muscular dystrophy and other neuromuscular disorders," according to its website. The foundation will provide a wheelchair accessible van, but the family must come up with half the cost -- more than $32,000, Chris said.
Those wishing to make a donation may do so by visiting the Hope4Billy.com website.
For a look at Billy's visit to the fire station, see the video below:
