The Camarillo and Fels family are raising $35,000 for matching funds for them to get an accessible vehicle for the family. From Chula Vista, Cesar, 17, and Matteo, 9, are brothers living with Duchenne muscular dystrophy, a progressive neuromuscular disorder. The funds raised will be matched by the Jett Foundation, a nonprofit organization fighting Duchenne muscular dystrophy with its Jett Giving Accessible Vehicle Fund to assist families affected by DMD in purchasing unaffordable, but vital accessible vehicles. All donations to Jett Foundation and Jett Giving Fund are tax deductible.
The boys’ mother, Lorraine Pina, is heavily involved in the Duchenne community via Facebook groups and connects with other moms frequently for advice and resources, which is how she found Jett Foundation. As participants in Jett Foundation’s Accessible Vehicle Fund branch of the Jett Giving Fund, Pina, Cesar, Matteo and their family will aim to raise half the funds needed, or more, for their accessible vehicle before Jett Foundation steps in to cover the remaining costs and purchase the vehicle outright. With Matteo’s muscles rapidly becoming weaker and Cesar’s scoliosis, Pina knows an accessible vehicle will make a major impact on their lives.
“I had three boys with Duchenne muscular dystrophy,” she said. “It is a genetic disorder that overtime breaks down proteins in the muscle. So, they become weak. When they are born, they look normal. You cannot tell if anything is wrong. It is not until they get older, to crawling or walking stages that you see these delays. Some children do not crawl. Some children cannot run. The majority have difficulty running, hopping, climbing. Anything normal kids can do activity-wise, they struggle with.
“I had three boys,” she continued. “I lost my 20-year-old almost two years ago. It either affects your heart or your lungs, because they are muscles, and they get weaker and cannot support the body. My son passed from restricted lung disease because his lungs were very weak with complications at home.”
Pina said her two boys have Duchenne muscular dystrophy and Cesar is having heart problems.
“That is how Duchenne is affecting him,” she said. “My 9-year-old just stopped walking two months ago. So, he is not ambulatory and trying to get him in and out of a vehicle is extremely difficult. He is about 85 pounds. He is almost as tall as me. He is a big kid, so he cannot bear weight on his legs, so anytime I must take Cesar or Matteo to an appointment, I must physically carry them to my vehicle. If it is Cesar I must have someone sitting next to him or support pillows around him because he cannot hold himself up. Matteo can hold himself up, but he cannot get into the vehicle.”
Pina said her Matteo goes to the Children’s Hospital Los Angeles as she likes the care he gets there, but not the long drive to Los Angeles. She said he is comfortable in his wheelchair, but with her vehicle, she is unable to use it, which makes the long drive extremely uncomfortable for him.
“Not being able to transport my kids independently or safely it is not only uncomfortable, but it takes away their independence,” she said. “When they are home, they can go wherever they want in their powered wheelchairs. But with me having to put them in manual chairs they can only go where I am pushing them. I cannot get their powered chairs around.”
Pina said that when she applied for the program, she did not realize that the family had to raise matching funds, but she has high hopes for gaining the funds and the accessible van is vital for her boys’ health needs.
To donate, visit the Jett Foundation at www.jettfoundation.org/fund-recipient/camarillo-fels-family/.
