Shriners helps Waianae
By Alisa Lavelle
girl battle rare disease
Star-BulletinTwelve-year-old Malia Wilson likes to draw flowers, write fictional stories and sing 'N Sync songs in her Waianae home.
She did the voice-over for the City's public service announcement for the Satellite City Hall. She wants to be on television one day.
Malia's mom, Lynn Caminos-Wilson, worries that she won't grow up. Malia is an out-patient at the Honolulu Shriners Hospital for Children.
After falling ill at age 4, Malia was diagnosed in November of last year with a rare disease called linear scleroderma, which shrinks skin, muscle tissue and internal organs. The disease has no known cure.
"I'm scared because I don't know too much about the disease," said Caminos-Wilson, who used to dream her daughter would be Miss America.
The left side of Malia's face and body already show deformities formed by the progressive disease.
"Some people look with care, but those people that stare and follow us make me angry," Caminos-Wilson said.
Malia will have surgery in September to help fill out the skin and muscles of her face at the Shriners Hospital in Chicago. Shriners is absorbing the cost of two roundtrip tickets and the surgery."It was unique and a coincidence that we had a unit that could do this kind of surgery," said Richard Wong, Shriner caseworker for Malia.
The cranial facial reconstructive surgery unit became available just six months ago, said Shriner nurse Andi Kubota.
"Shriners usually takes on any children with orthopedic problems, burns and spinal cord injuries," he said. Shriners provides free medical care to anyone who qualifies.
The Wilson family is hosting fund-raisers and holding a softball tournament Aug. 13 to 15 to help with other costs.
"I want to stop in California so that Malia can see a specialist for the disease," her mother said.
Although a doctor in Chicago will see Malia, her mother wants another opinion and clearer understanding of the disease. This means additional doctor fees and all ground transportation, housing, additional plane fares and food costs must be taken care of by the family.
Both of Malia's parents are out of work. Her father, Eliu, 42, got injured on the job, and her mother quit her job because of the demands of care-giving. Malia has one older brother, 18; and four younger brothers; twins age 6, and one each ages 7 and 4.
To play in the benefit softball tournament, contact the Wilson family at 696-1290. The entry fee is $225 per team. Or send a check made out to the Waianae Christian Fellowship for Malia Wilson to 87-153 Palani St., Waianae, Hawaii, 96792.
Waianae Christian Fellowship Pastor Scott Duncan said there is no cutoff date for donations because he believes it will be an on-going process.
"Malia is such a sweet little girl," Duncan said. "I hope they find a way to curb it (the disease) or get rid of it."
