article about appeared in Medford newspaper on Christmas Eve

December 26, 2006

December 24, 2006

His fighting spirit: pulling together for

A community rallies to help a family pay mounting medical expenses

for a sick 5-month-old boy

BY ANITA BURKE

MAIL TRIBUNE

In one hospital or another for most of his young life, 5-month-old

s fights the tubes that help him breathe and eat,

his mom Racheal s said. He won't stay in the position nurses

put him in.

His fighting spirit, and that of his family, has won the hearts of

his caregivers, though, who have established a fund to help his

family deal with mounting medical bills.

" You meet a lot of families, but they are really special, " said

Deneen Silva, a nurse at Southern Oregon Pediatrics, where is a

patient.

has CHARGE Syndrome, a genetic abnormality that causes a cluster

of symptoms including heart defects; eye, ear and nose malformations;

swallowing and breathing difficulties; facial palsy; and brain

abnormalities that can cause developmental delays, s said. He

has spent only one month and 11 days of his life at home, she said.

attracted community attention in late November when he stopped

breathing one afternoon at home and the quick response of Medford

police officer Tim Garr got him breathing again.

Since then, he has been recovering at Doernbecher Children's Hospital

in Portland.

His parents Leon and Racheal s, who own The Store, a market

and deli at 2037 Road, take turns traveling back and forth to

be with in

Portland and to tend the store and 's sister Meagan, 7, in

Medford. Racheal s' older son, , 11, lives with his dad,

but will visit for Christmas.

They've had plenty of experience with the grueling routine since

was born July 11.

When Racheal s was in labor at Providence Medford Medical

Center's BirthPlace, the couple's only concern was that the baby

might be breech. But arrived full term — and only 4 pounds, 14

ounces, with a cluster of birth defects.

He spent his first month at Rogue Valley Medical Center's neonatal

intensive care unit, ringing up a $104,000 medical bill, s

said.

Medical insurance paid all but $32,000, she said. As small business

owners, the family has struggled to qualify for government insurance

programs that might provide more complete coverage, she said.

After a month at home, was stricken with pneumonia, putting him

in the hospital in Portland for another month. He was home for six

days before he had open-heart surgery Oct. 19 at Doernbecher to

repair holes in his heart wall. After five weeks recovering, he was

home for five days before he stopped breathing and was rescued by

Garr. During this hospital stay, he's had a gastric surgery to

prevent his stomach contents from leaking into his lungs, the cause

of his pneumonia.

Friends and family estimate medical bills likely have topped $400,000.

" They are just scraping by, making minimum payments on everything, "

Silva said.

" They are worried about the baby, so the bills just pile up in

boxes, " said Liz Stromsnes, Leon s' mom, who lives in

Springfield and helps however she can.

Racheal s said her family, who own Star Catering, Joe's Sports

Bar & Grill and the Hungry Woodsman, also have helped out.

Leon s sold his GMC Yukon after was born to save money on

car payments. He got a 1984 Ford Bronco from his dad, but the

Bronco's poor gas mileage makes it expensive just to get across town,

Racheal s said. The family uses a newer car to go to Portland,

but still struggles, Stromsnes said. They sleep in the hospital room

with to save on hotel costs.

" The financial obstacles are appearing to become more difficult for

the family to overcome, " said Silva, who worked with the family to

set up a benefit account for .

The account in the name of s is at Rogue Federal

Credit Union and donations can be made at any branch.

Reach reporter Anita Burke at 776-4485 or at aburke@...

December 27, 2006

Dear Liz,

Thank you for keeping us updated on . It is great to see the community

pitching in to help with his medical bills. That shows great compassion and

spirit.

We will be hoping that he can be home soon. I would love to see his family,

and all families facing similar issues, get good news in the New Year.

Best to you,

article about appeared in Medford newspaper on

Christmas Eve