Girl Waits For Special Chair
Red Tape Holds Up Process
MIMS-- Two-year-old Sierra Journey Factor will die sometime between her first homecoming dance and her 10-year high school reunion.
That prediction from doctors of the brown-haired girl who giggles often and sings for strangers has been unraveling like a loosely twined ball of razor-wire in her parents' minds, more painful to consider every day.
When Sierra's condition was diagnosed last year as chronic Spinal Muscular Atrophy, a genetic disease that weakens her muscles and keeps her from walking, doctors said her life would end between her 15th and 30th birthday. Anthony and Shaylene Factor were determined to give their daughter the best life possible.
But without insurance, the family hasn't been able to acquire a motorized wheelchair for more than a temporary basis. Sierra received one on loan last week, but the struggle in cutting through red tape left her without a power chair for about six months.
The time lag is a concern, since experts said it's crucial for children her age who have the disease to learn to move on their own in a wheelchair, or risk the chance of never being able to do so. Her condition doesn't allow her to use a manual wheelchair. Whether she'll be approved for a permanent customized power chair through Medicaid remains in question, since her first request was turned down.
"When she doesn't have her wheelchair, I'm her legs," said 22-year-old Shaylene Factor, who spent about $2,000 making her home wheelchair-accessible. "She can't sit up by herself, and we can't sit her down in any public seat because the disease makes her extremely susceptible to germs."
The Factors' request for a customized power chair that would cost about $13,000 was turned down in May by the Children's Multidisciplinary Assessment Team, a state group of children's medical and developmental service agencies that evaluates requests for high-cost medical equipment to be paid for through Medicaid.
Among the reasons for the denial cited on the CMAT report was that "a motorized wheelchair was not a safe means of transportation for Sierra at 2 years of age."
But there is no specific age that CMAT requires a child to be in order to be considered safe to operate a motorized wheelchair, said Barbara Ray, regional nursing director for the Brevard County district of Children's Medical Services, an agency that is part of CMAT.
Officials of Families of Spinal Muscular Atrophy, an international nonprofit group, said hundreds of children of Sierra's age and even younger rely on power wheelchairs to get around and do so without any reported problems.
In Titusville, a 2-year-old boy who has Spinal Muscular Atrophy recently celebrated his birthday in a motorized wheelchair, according to a recent Florida Today story. The family of that boy, Christian Ward, was unavailable Friday.
According to the CMAT report, the Factors' request for a power chair also wasn't approved because of the "high cost of the wheelchair" and the likelihood she'd need another one when she outgrows it.
"Unfortunately, these types of problems happen often with insurance companies," said Audrey Lewis, the group's executive director, adding the best way to combat the issue is to better educate insurance agencies about the needs of children with the disease.
Ray is prevented by Florida law from speaking about Sierra's case. Along with each child's age, she said that CMAT officials consider their medical condition and physical abilities in making a recommendation to Medicaid.
"If it's so unsafe to have the power wheelchair, there should be a standard for all handicapped children," Anthony Factor, 34, said.
At the moment, Sierra is using a power wheelchair on loan from Custom Mobility, a business in Largo that provides customized seating for children with disabilities. The business is designing a wheelchair for Sierra that will cost less than $12,000--slightly less than the previous request, since it won't have an electric tilt option.
That's also cheap enough that CMAT won't be involved in recommending whether Medicaid should pay for it. The Factors are hoping that will mean they'll have better luck in being approved for coverage this time.
Oblivious to the ongoing issue is Sierra, who plans to steer her wheelchair up to the doorsteps of a few homes on Halloween wearing a Cinderella costume.
"It's my special chair", Sierra said, grinning as she slowly turned the heavy machine in small circles. "I can spin donuts in it!"
Girl In Need of Chair Now Has
3 of Them
MIMS-- The life expectancy of 2-year-old Sierra Journey Factor remains in question, but the kindness of strangers certainly does not.
The family of the friendly girl who was found last year to have chronic Spinal Muscular Atrophy, a genetic disease that doctors said will end her life between her 15th and 30th birthdays, received several surprises Tuesday. The family received donations of thousands of dollars' worth of specialized medical equipment, including three motorized wheelchairs of varying sizes that Sierra will be able to use for years to come.
"We couldn't get the government to help us get her a power chair in a year and a half, and our community came together in two days and got her three of them," said Shaylene Factor, Sierra's mother.
Anthony and Shaylene Factor had been trying for more than a year to get approval from Medicaid to pay for a motorized wheelchair, which experts said she must have soon to help her muscles strengthen enough so she can sit upright in the chair as she grows.
Many Brevard County residents and organizations responded after a Florida Times report Sunday described the struggle the family faced in cutting through red tape to receive a power wheelchair while lacking insurance. Sierra went without one for about six months until last week, when she received a motorized chair on loan as the question of whether Medicaid would approve still remained.
Among those who donated chairs was 19-year-old Yvonne Poirier of Rockledge, who also was found to have Spinal Muscular Atrophy at 14 months old. Poirier also contributed a portable wheelchair and a shower chair.
Kelly and Deborah Solid of Palm Day donated a motorized wheelchair that had been used by their 7-year-old son, Mark, who died in July of the same disease. The Disabled Veterans of America No. 148 of Kissimmee contributed the third power chair.
"I'm glad they are going to be able to use it," said Kelly Solid. "It's important that people be aware of the needs of others and help them out."
Donations to cover the cost of adjustments on the wheelchairs and any medical equipment or expenses not paid for by Medicaid can be made to the Sierra Journey Factor Trust Fund at any Wachovia Bank, or to the Sierra Journey Factor Trust Fund, c/o Helen Powell, 3240 Parrish Rd, Titusville, FL 32769.