United Cerebral Palsy of the Inland Empire (UCPIE) is celebrating its 40th anniversary of helping children and families with disabilities such as autism and developmental delays.
John Sprogis is the CEO and president of UCPIE. He remembers when his twins, Cole and Ava, were born 13 weeks premature in 2007 and weighed little more than two pounds.
“When it was time for us to take Cole home, one of the doctors turned to me and said, ‘We noticed something. It looks like he’s got PVL.’ I didn’t know what the heck that was,” Sprogis said.
He now knows it is periventricular leukomalacia, a type of brain damage common in premature babies that can lead to motor developmental and cognitive problems, and a higher risk of developing cerebral palsy.
Cerebral palsy (CP) affects about 1 million people in the United States; the disease impacts muscle tone, movement and posture, according to the Cerebral Palsy Guide website. Symptoms include weak arms and legs, muscle spasms, chronic pain and developmental milestones. While it is the most common lifelong physical disability, individuals with mild CP may have a life expectancy similar to the general population.
“The doctor explained that (Cole) was never going to be a professional athlete,” Sprogis said. “(My wife) thought, ‘Oh, my gosh, this is awful,’ and for me, I said, ‘Well, hey, I’m not a professional athlete, so it’s not a big deal.’”
It was a big deal. Cole was later diagnosed with CP, and eventually he couldn’t crawl, walk or talk, and was fully dependent on his parents.
“There is a big range of individual abilities with any diagnosis,” Sprogis said. “Cole’s was severe.”
Sprogis and his wife contacted UCPIE, which provided respite for them.
“There was no charge to us,” he said. “Someone would come into our home and take care of my son while my wife and I were able to go out for a date night. Being a caregiver, whether taking care of their elderly parents or a child with special needs, can wear you down. It’s called caregiver burnout, and you just need to make sure that you have enough fuel in your tank to continue.”
Sprogis, a La Quinta resident, compared raising a child with cerebral palsy to running a marathon: You need to pace yourself and recharge.
“Married couples have a 60% failure rate. If you add a special-needs child into it, you have an 80% failure,” he said. “If we didn’t have those respite sessions from UCPIE, it’s possible our marriage would’ve completely collapsed.”
UCPIE serves between 250 to 350 families monthly and provided 150,000 hours of respite care last year.
“We have given 161 bikes since 2012. These bikes allow a child with a disability to bike alongside their family and spend more time in their community. Even children who are generally confined to a wheelchair are able to utilize these bikes and have their legs moving like any other child.”
UCPIE CEO John Sprogis
Sprogis was also worried about what would happen as Cole got older. “Cole was not mobile, and as a parent ages and a child ages, they’re heavier, so some of the activities that you could do when they are small become even more challenging,” he said.
UCPIE has expanded its outreach beyond a focus on children.
“I would love to see where we did a better job from cradle to grave for any child with a disability,” he said. “We may not be able to provide every service, but at least we can provide them with resources and have a positive impact on their life. … When they transition out of school, if we could help them get placed for employment, that would be huge.”
The organization has a family empowerment program with a licensed counselor who will meet with parents for seven weeks so they can talk about the journey.
“A mother whose 3-year-old son was autistic enjoyed being in our counseling program, because she was able to share stories and relate to others,” Sprogis said. “She got a lens into what the future might hold for her child, and it seemed a little less intimidating when you’re not doing it on your own.”
UCPIE also provides adaptive tools, including custom bikes.
“The custom adaptive bikes that we award to children and adults are $3,000 to $5,500 and not covered by health insurance,” he said. “We have given 161 bikes since 2012. These bikes allow a child with a disability to bike alongside their family and spend more time in their community. Even children who are generally confined to a wheelchair are able to utilize these bikes and have their legs moving like any other child.”
Sprogis credits his son, Cole, who passed away when he was 15, for making him who he is today.
“He saved and extended my life,” he said. “There were times when my corporate career was super-stressful, and just having him lay on my chest at the end of the night would control my heart rate and breathing.”
For more information, visit ucpie.org.