Wheels for Willow
Fundraising underway in Barrington to support purchase for 8-year-old with muscular dystrophy
Being confined to a wheelchair isn’t stopping eightyear-old Willow Ross from enjoying life to the fullest.
Willow was diagnosed with a rare type of muscular dystrophy called Bethlem Ullrich Myopathy at six months of age, a slowly progressive muscle disorder.
Since then, she has been a regular patient at the IWK, undergoing various procedures and surgeries.
Despite that, Willow “continues to grow into the most optimistic, empathetic, resilient child we know,” says mom Janna Goulden. “She loves to dance and has recently joined a dance class in Halifax for children with disabilities. She also loves going to the movies and having play dates with her besties. She truly deserves the whole world and inspires anyone that meets her.”
Willow has recently developed scoliosis, a curve in the spine, and is awaiting surgery planned for the fall.
“Due to that, combined with her muscle weakness, pushing a manual chair has become more challenging and tiring for her. She decided to test drive an electric chair and instantly fell in love with the freedom and independence it provided,” said Goulden.
The electric chair is a loaner from the IWK and is kept at Forest Ridge Academy in Barrington where Willow is in Grade 3, because the family doesn’t have the means to transport it. She continues to use the manual chair at home.
“Ever since she tried out the electric chair, she calls that one a dungeon now,” says Goulden laughing. “She can’t zoom around like she can in the other one.”
HER OWN ELECTRIC WHEELCHAIR
Willow will soon have her own electric wheelchair to use full-time thanks to the Easter Seals, who will be donating the chair to her this fall.
As it is now, Willow’s family is able to carry their daughter to the family vehicle, and fold up her manual chair and put it in the trunk.
With an electric chair that won’t be possible.
“The electric chair is really heavy,” said Goulden.
To accommodate Willow’s new wheels, the family needs to purchase a wheelchairaccessible van at an estimated cost of between $50,000 to $100,000.
“You can get second-hand ones about five years old that are already modified and about $50,000 for a decent one or a new one already modified for about $100,000 but the conversion price alone is like $40,000 to $50,000,” said Goulden, adding that to her knowledge, Nova Scotia is the only Maritime province that doesn’t offer some type of funding to help with conversion costs.
The family is reaching out for help to make Willow’s dream come true.
GOFUNDME CAMPAIGN
A Gofundme to help Willow get a wheelchair-accessible van is currently underway, the family is accepting donations by e-transfer, are planning to hold a Dutch Auction at the Barrington Area Lions Hall on April 5 and will be contacting local businesses for support.
The family hopes to be able to get the van by the fall when Willow’s very own electric wheelchair arrives.
Willow says she’s excited to be getting an electric chair to use full time.
“Then I can go really fast,” she said.
Not only will the electric chair be more comfortable, it will be adjustable, enabling Willow more freedom, said dad Jeff Ross.
“Even something simple like going to the grocery store, instead of us pushing her around, she can zoom around and put stuff in the cart.”
In the meantime, Willow is enjoying playing with her friends. Her favourite subjects in school are math and reading. She is looking forward to the next time she can go sledging at the Yarmouth Mariners Centre.
“You name it, she likes to do it,” said Goulden. “She’s very social. She wants to go do fun things.”
Willow is also preparing for her next surgery by watching Tiktoks made by other kids who have had the same surgeries as her.
The family hopes to be able to get the van by the fall when Willow’s very own electric wheelchair arrives.