Community Corner

Bounce House Event to Benefit Terminal Patients

The condition leaves people in a vegetative state.

Twin boys were born in 2008 to a local couple. Today, one is playful and lively; the other lives with no ability to move his body.

Trevor was diagnosed with Krabbe Disease before he was a year old, recalled Amy Zebrack, a family friend and co-president of Temecula Valley Mothers of Multiples, a support group dedicated to helping families with twins.

An upcoming event aims to help families with the cost of raising a child who needs constant care around the clock.

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Pump It Up in Murrieta is set to hold a party on April 11 at 10 a.m. and again at 4 p.m. It costs $10 per child and includes 90 minutes of jumping, pizza and a beverage.

Seventy percent of the proceeds will benefit the Peace, Love and Trevor Foundation, an organization started by the boy’s family to help families struggling with the disease.

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Steve and Nicole Aldrian of Murrieta had their twins on November 5, 2008. Seven months later, they took Trevor to San Diego Children’s Hospital because he was having digestion problems and putting on little weight. Ten days later, they went back home with the diagnosis of Krabbe disease, a rare, terminal disorder that affects the nervous system.

The family hopes to get the state legislature to add the disease to the California Newborn Screening list. The disease is untreatable by the time the patient exhibits symptoms, and a test at birth costs only a dollar, Zebrack said.

“In other words, by the time the parents of a Krabbe child thinks something is wrong, it is always too late,” she said. “However, this could've been prevented if California included it as part of its newborn screenings, as New York does.”

Trevor is two-and-a-half years old and needs constant care, though his parents are battling their insurance “tooth and nail” to pay for the treatment and equipment he needs, Zebrack said.

“They both had to quit their jobs to provide for Trevor’s care,” she said.

They became experts in treating him over the years. Once, they had to give him CPR on the airport floor when he stopped breathing in transit, Zebrack recalled.

The Aldrians did promotional work for Hunters Hope Foundation, since having twins, one with Krabbe disease and one without, is so unique.

The benefit will include vendors, a bake sale and a silent auction. The first 100 guests will get a bag of prizes. Organizers recommended making reservations by calling 951-677-1933.


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