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“It’s been the greatest therapy ever,” said Nancy Milla of the annual fun run she directs each March in honor of her 5-year-old son Benny Penner who died March 25, 2010, from Batten Disease, a rare and fatal disorder of the nervous system.
A perfectly healthy twin, Milla said Benny’s speech started to regress when he was 3-and-a-half years old. The family sought speech and then occupational therapies, yet within weeks Benny had his first grand mal seizure, Milla said of the terrifying time.
“This was a completely healthy child who started getting these weird symptoms. It was bizarre,” she said.
The family spent a week at Lucille Packard Children’s Hospital at Stanford for diagnostic tests before Benny was ultimately diagnosed with the infant form of neuronal ceroid lipofuscinoses, a neurodegenerative disorder also known as Batten Disease.
“It’s this horrific, rare, inherited disorder,” Milla explained. “My husband and I looked at each other blankly because we didn’t know anyone in our families with it.”
Milla called all the pediatric hospices in the greater Sacramento area.
“Everyone kept saying, ‘You’re too far out; we’re so sorry,’” she said of living in Placerville. “I kept asking, ‘Where do I go?’ The only other option was sitting in the hospital waiting and I didn’t want Benny’s last days to be in the hospital.”
Their neurologist at Lucille Packard told the family about Partners in Care, a non-profit community organization dedicated to improving the care of the seriously ill in El Dorado County since 2001.
“We began our organization with a grant from the California Endowment,” according to the Partners In Care Website. “These funds allowed Partners In Care to begin offering services free of charge to our community. Through grants, donations, fundraising activities and revenue from our thrift store, we are able to continue to serve our clients free of charge.
“While hospice organizations serve those who are terminally ill, have six months or less to live, and are no longer seeking aggressive, curative treatments, our program can serve our clients and their families, regardless of prognosis, treatment, expected outcome or ability to pay.”
Benny’s family gives 100 percent of The Spirit of Benny registration fees to Partners in Care.
“We had such an incredible experience with Partners In Care. The support they provided was huge,” said Milla. “To know what we went through to connect with them, I want other people with terminally ill kids to access that support more readily and not be in the dark like we were.
“Partners In Care pieced together what they could do for us because they’re not an official hospice but they help people with palliative care,” she continued. “They try to give family members the breaks they need and care for all ages. They connected us with a physician who could care for us. Their nurses gave us breaks and one of them even folded my laundry while I was out for a walk one day. They did stuff that when you’re in a state of crisis isn’t getting done. They also provided us with education, like what happens when a person enters the end of life stage and what to prepare for … They held our hand through the entire process. We don’t know what we or Benny would have done without them.”
Nearly 200 participants registered for the first Spirit of Benny run; the second had 331 racers.
“This year our goal is 500 runners and walkers, which is an aggressive goal,” it reads on the race Website. “The goal for 2014 is $15,000, which would double the charitable amount raised in the past two years combined, to hopefully total $30,000 over three years.”
“Since the first race, Partners In Care has been able to take on other pediatric cases with the funds we’ve raised for them,” said Milla. “We’re raising funds so they can expand their care and get more families connected with the right people and maybe provide some respite care.”
Benny’s twin brother Tomas is an energetic fourth-grader at Holy Trinity School in El Dorado Hills and he blows the race’s starting horn each year in honor of his brother. “He’s so resilient,” said Milla of her surviving son.
“An increase in runners will mean an increase in donations to PIC,” according to the Website. “As an incentive, registered runners and walkers will enjoy a T-shirt (while supplies last), free goodies in reusable cloth grocery bags, music by the Island of Black and White, a scenic paved trail tucked in the woods of El Dorado County and higher odds of winning a medal in each age category (Olympic style in a gold, silver, bronze neck ribbon/medals). Top female and male runners win a free pair of ASICS running shoes. The event is professionally timed and laptops will be on hand at the end of race to check times and standings.”
“The worst thing would be to lose your child and feel there is no purpose for it,” said Milla. “This has given Ben’s life more meaning. This is his legacy: that we can carry on and be voices and advocates for families and kids who don’t have access to appropriate support services.”
Registration can be completed online at thespiritofbenny.org and will be available on race day as space allows.
The staging/starting area is 330 Fair Lane in Placerville. The race takes place along the scenic El Dorado Trail.