Tuesday, July 6, 2010

SnapDragon Press Release

Contact: Sam Edwards, esrastrust@gmail.com
FOR IMMEDIATE RELEASE
Scottsdale, AZ, July 6, 2010 -- Four-year-old Esra Grace Edwards gasps and giggles at the prospect of flying to a “far-away place” and receiving a new wheelchair. A small family firm in Cambridge, England - DragonMobility Ltd. - makes a unique, fully-customized wheelchair that can change Esra’s life. Built for children 12 months to elementary school age, the SnapDragon provides movement in three directions; full speed at any height; controller programming to suit the needs of the user; custom built seating; a standing attachment and more.

Daughter of an active-duty Coast Guardsman, Esra was born with severe Spina Bifida; neurological, orthopedic, cardiac, respiratory and genetic impairments; along with cognitive, motor and speech delays. Esra does not currently walk or stand, and crawls with difficulty. While she uses her arms to propel her manual wheelchair small distances, without a mobility device Esra barely moves from where she is initially placed. When Esra was 21 months old, her parents starting searching for ways for Esra to move independently and to explore her world. As devout Latter-day Saints, they knew God would provide a way.

After an extensive search, Esra’s parents found Dan and Lou Everard, the masterminds behind DragonMobility and parents of Ruth. Ruth, who has Spinal Muscular Atrophy, is 30, went to Oxford University and trained as a paralegal in London, where she has her own apartment, drives her own car, and lives independently. All this success has been possible because when she was 21 months old her father had designed and built her a special powered wheelchair. This allowed her independent mobility both in a seat that went up and down as well as along, and in a standing frame in which she could move as if she were walking or running. From 22 months old she was confident and highly mobile. It enabled her to develop her personality and social skills at the same rate as her able-bodied peers, and her expectations have therefore never been different from theirs.

A SnapDragon wheelchair will give Esra the independence she needs to thrive and engage in everyday activities all four year-olds experience,” explained Sam Edwards, Esra’s father. “For the first time, she could go to a sink and brush her teeth, or wash her own hands in preparation for a meal. In a social setting she could meet new friends standing up and look them in their faces. She will be able to reach objects on the kitchen counters and lower her seat to ‘run’ in a field and feel the grass pass under her hand.”

No wheelchair made in the USA would provide Esra with more access than the SnapDragon. However, the family’s military health insurance provider, TRICARE, does not cover the cost because the wheelchair has raising and lowering capability. They only cover devices that take a person from point a to point b. In any event, DragonMobility does not accept TRICARE nor does it distribute through U.S durable medical equipment vendors.

The short-sightedness of the insurance industry illustrates why Esra’s is such a moving but disturbing story. For the last 25 years most small disabled children have been left immobile to suffer the secondary disabilities of compromised joints, passive attitudes and low expectations that affect children if they miss out on their developmental milestones. The appropriate technology has been there for 25 years. The research has been done. It is just a failure of awareness, will and finance.

Since this January Esra’s parents, Sam and Peggy Edwards, have been raising money to off-set the roughly $26,000 cost. Charitable donations allowed them to purchase a used SnapDragon and ship it from Texas to DragonMobility’s facility in England, while a separate donation of frequent flyer miles has provided round-trip plane tickets for the family to London’s Heathrow airport.

The Edwards will traveling to England the last week in July. On the way, they will participate in a benefit for Esra in Mystic, CT near their previous military station. They will spend ten days in England training, fitting and customizing the chair for Esra.

No comments: