Family aims to raise funds, awareness of rare disorder

Abalahins seek cure to honor son

Roxanne Cooke

Special to the Gateway

Paula and Oscar Abalahin want to find a cure for the disease that killed their 8-year-old son last October.

In 2007, the Port Orchard couple founded Jaxon’s Cure, a nonprofit organization dedicated to researching the rare disorder their son Jaxon suffered from: subacute sclerosing panencephalitis (SSPE).

The disease, which primarily affects children with a history of measles, is almost always fatal.

Initially, the Abalahins spoke to doctors who had never heard of SSPE. They had to search as far as California to learn that their son had a disease with no known cure.

Even after Jaxon’s death, the Abalahins are full of hope for others. They want to share their story and spread awareness of the disease, with the goal of eventually finding a cure.

As part of their efforts, the family will host a SONICFLOOd concert on May 30-31 at Chapel Hill Presbyterian Church in Gig Harbor. SONICFLOOd is a contemporary Christian band from Tennessee whose lead singer also faced an incurable disorder — Crohn’s disease.

Rick Heil, 42, spent 27 years taking medications for Crohn’s, which causes inflammation of the digestive tract. He credits God with his recovery and now sings about restoring hope to others.

“We want to be about something bigger than ourselves,” Heil said. “If that means caring for the poor, sharing testimony of healing, or getting money for some research to find a cure, that’s something we absolutely want to be about.”

That was exactly what Elaine Hettick, Jaxon’s aunt, wanted to hear when she was looking for a band to perform at a Jaxon’s Cure fundraiser.

“He gave me hope,” Hettick said. “That was what was really inspiring to me.”

Hettick’s two daughters have joined the effort as well. In promoting the concert, they’ve shared Jaxon’s story with local congregations and youth groups.

“We loved (Jaxon), and we wanted to help find a cure,” said Erika Hettick, 12.

“It’s hard on us,” added Shawna Hettick, 10. “It just doesn’t seem right. Why would an 8 1/2-year-old pass away?”

The two girls gave up their own birthday presents this May, requesting that party guests donate to Jaxon’s Cure rather than bring gifts. They raised more than $250 — and their generosity has not been lost on their aunt and uncle.

“We’re so blessed to have these guys in our family,” Paula Abalahin said. “Jax loves these guys so much. He still does.”

Jaxon was adopted by the Abalahins when he was 18 months old. He was born in the Philippines and contracted measles without further complications when he was 7 months.

Jaxon was a typical boy, his father said. He loved baseball and Power Rangers. He also was incredibly giving and always put others first.

“He was just a picture-perfect little boy,” Oscar Abalahin said. “He was very kind and considerate.”

In February 2006, when Jaxon was almost 6, his parents began to notice strange behavior. Jaxon’s head would drop and snap back suddenly. Doctors were at a loss for the cause.

“They had no idea,” Paula Abalahin said.

After months of research, doctors visits and tests, Jaxon’s official diagnosis of SSPE was made in June 2006. Medications can help treat the symptoms, but there is no cure.

The sooner SSPE is caught, the higher the chance for remission, Oscar Abalahin said. Jaxon even showed signs of improvement along the way, and his family was hopeful he would survive.

But last August, Oscar Abalahin said Jaxon’s condition took a turn for the worse. He died on Oct. 6.

Jaxon’s passing hasn’t stopped the Abalahins and their family, though. Their nonprofit organization is still going strong — they’ve even found a researcher from The Scripps Research Institute to help with the cause.

“We know it’s not an overnight thing,” Oscar Abalahin said. “We want to keep on going.”

“We can’t settle on ‘We don’t know what it is,’ ” Paula Abalahin added. “We just don’t want any families to go through that.”

Throughout their struggle, and even now, it’s Jaxon who keeps them going.

“Jaxon’s always been our guiding light,” Paula Abalahin said. “It’s always been Jaxon.”

SONICFLOOd Awareness Concert for Jaxon’s Cure

When: 7 p.m. May 30-31

Where: Chapel Hill Presbyterian Church, 7700 Skansie Ave. in Gig Harbor

Tickets: $35 through www.jaxonscure.org or by calling 253-232-2083

All funds go toward Jaxon’s Cure, a nonprofit organization dedicated to researching subacute sclerosing panencephalitis (SSPE).

Subacute Sclerosing Panencephalitis (SSPE)

Subacute sclerosing panencephalitis (SSPE) is a progressive neurological disorder caused by a mutated form of the measles virus. It mainly afflicts children and young adults.

Most children with SSPE have a history of measles infection at an early age.

Symptoms include memory loss, irritability and disturbances in motor function, including involuntary jerking movements of the head, trunk or limbs. Seizures also may occur.

SSPE is almost always fatal. Progressive deterioration over months or years can lead to coma and death.

There is no cure for SSPE. Good nursing care is the most important part of treatment, along with anti-convulsant and anti-spasmodic drugs, when needed.

The incidence of SSPE declined by at least 90 percent in countries that have practiced widespread immunization with measles vaccine.

Sources: Jaxon’s Cure, www.jaxonscure.org; National Institute of Neurological Disorders and Stroke, www.ninds.nih.gov; World Health Organization, www.who.int.