VINTON–Five year old Ellie Barbour has recently been named as a poster child for the Shriners Hospitals for Children. She was born with a rare genetic disorder known as Cerebellar Hypoplasia and diagnosed when she was eight months old.
Her parents, Donald and Nicole Barbour, moved from Salem to Greenville, South Carolina, in 2014 in part to be closer to the Shriners Hospital which is located there. The Shriners provide specialty pediatric care for children up to 18 years of age with orthopedic conditions, burns, spinal cord injuries, and cleft lip and palate.
“With Cerebellar Hypoplasia the baby is born without part of the cerebellum, which controls balance, equilibrium, eye movement, and the mechanics of speech,” explained Barbour. “In order to improve fine and gross motor skills, physical and occupational therapies are needed.”
Currently there are less than 200 diagnosed with this condition within the United States.
“One of the reasons we moved to Greenville was to get connected with the Shriners Hospital,” said Donald Barbour. “We had toured the facility on previous visits and had heard many wonderful things about the care there.”
Barbour said that within two months of beginning therapy at Shriners, Ellie could not only stand independently for longer periods of time, but could also brush her teeth, use utensils better, and take her shoes on and off.
Ellie is the granddaughter of Donald Barbour, Sr. and his wife Juanita, who owned and operated the Lake Drive Swim Club on Niagara Road in Vinton from 1973 until 2004, when it was sold to Tommy and Karen Wood, renovated, and re-opened as Woodland Place.
Donald Barbour, Sr., was a Roanoke City firefighter for 23 years until he passed away suddenly from a massive heart attack in 1976 when his son was only four years old. Juanita Barbour said that her husband became interested in the Shriners organization through friends in the fire department who told him about the good causes the organization supported.
“He always threw himself wholeheartedly into whatever he became involved with,” said Juanita Barbour. “Just joining was not enough; he had to become actively involved. He was in everything all the way.”
When the elder Barbours went to a Shriners’ convention and he discovered other groups across the country had Klown and Motor Units, he took it upon himself to get the units organized at the Roanoke Shriners.
“My dad was a Shriner back in the 60’s and 70’s,” noted Barbour. “He was very active and even helped to start their Motor unit and Kazim Klown unit and was their first Director in Roanoke. His role in parades was that of a Hobo on a scaled-down motorcycle.”
In fact the Kazim Klown unit flew to Greenville back in the 60’s to tour the Shriners Hospital there.
“I know that he is so proud of what his fellow Shriners have done to create such a wonderful hospital,” said Barbour. “It’s like we’ve come full circle as a family with Shriners. The hospital means the world to us.”
“We just felt as though God was pulling us this way and bringing things full circle between my Dad who loved the Shriners so much, and Ellie who needed more extensive weekly physical therapy and occupational therapy,” said Barbour.
His mother said that “everything fell into place regarding the move to Greenville. Their home in Salem sold in just 19 days.”
“We chose Shriners because of their reputation as having top quality doctors and therapists, plus when you have to get tests done you get the results within minutes or hours and don’t have to wait a few weeks,” said Barbour. “The professionals there communicate right away with each other. Also, they cover fully any costs beyond our insurance. Costs are high for newer equipment for Ellie’s braces, or any other new equipment.”
“If Ellie needs any future surgeries on her hips or knees, then they are excellent at doing that due to their concentration on orthopedics,” said Barbour. “All of this, plus it was a passion of my Dad’s. He knew of the wonderful things happening there. If families have to stay at the hospital for a few days or weeks, their hospital rooms actually look like higher end hotel rooms to make families feel more at home. I don’t know of any other hospitals that offer that level of comfort for families.”
According to their website, Shriners Hospitals for Children is an international health care system of 22 hospitals “dedicated to improving the lives of children by providing specialty pediatric care, innovative research and outstanding teaching programs.” The Greenville Shriners hospital has affiliations with several nearby universities, which enables them to “provide a variety of education opportunities as well as share world-class doctors who are part of a total medical team dedicated to providing the highest quality of care.”
It is not necessary to be affiliated with the Shriners to be served by their hospitals.
“Most people have zero affiliation to the Shriners through their family,” said Barbour. “I think we’re one of the few in that regard.”
Shriners Hospitals are one of the most highly rated charities by such organizations as Charity Navigator because donors can be confident they are giving to a good cause where a very high percentage of the money collected goes directly to the cause, not to administrative overhead.
“I want donors to understand just how appreciative our family, and the many families that I see at the hospital on a weekly basis, are for the amazing care our children receive from top-notch doctors and medical staff,” Donald said. “From our first visit, Shriners provided consultations and test results within hours – while other medical facilities had taken weeks. Everyone at the hospital is second-to-none when it comes to working with children with disabilities.”
Another factor in the Barbour family’s move to South Carolina was a new job for his wife who is an engineer. Donald Barbour was a teacher in the Roanoke County and Salem school districts for many years. With their move to Greenville, he made a career change and returned to a dream he had as a young man to sell real estate. His new livelihood gives him more flexible hours for getting Ellis established with new doctors and therapies.
As for becoming a Shriners poster child, Barbour said they were “approached by the Shriners about a month or so ago to see if we’d be interested in sharing Ellie’s story at an upcoming event with former NFL, Clemson, and University of South Carolina football players.”
“About 2-3 weeks ago they asked if they could take pictures of her during therapy and add pictures from the past for a poster for the event,” said Barbour. “They knew of my dad’s Shriners connection so maybe that is what prompted them to reach out to me.”
More information on the Shriners Hospitals for Children is available at www.shrinershospitalsforchildren.org.