Robbie Foundation provides wheelchair for Portland girl with rare condition

Desiray Gallerani
Brendan Twist | The Forecaster

PORTLAND, Maine — A Scarborough nonprofit’s gift of a pediatric wheelchair will help a local child with a rare arterial disease travel to school safely and better experience the city of Portland.

After receiving radiation treatment for a brain tumor, Desiray Gallerani developed Moyamoya syndrome, a condition in which the internal carotid artery thickens and constricts, causing numbness of the extremities and risk of blood clots.

Gallerani, a 7-year-old who attends Hall Elementary School, also has hypothalamic obesity and vision problems and is unable to walk long distances.

When she grew out of her last chair in just a year, her single mother, Carol Gallerani, had to figure out how to pay for a new one. Despite a doctor’s recommendation that Desiray use a Convaid EZ Rider Pediatric Wheelchair, private insurance and MaineCare wouldn’t cover the $2,000 cost.

A caseworker for Catholic Charities Maine suggested Gallerani apply for support through the Robbie Foundation, which provides adaptive equipment and therapy treatments that aren’t covered by insurance for developmentally disabled kids.

With the foundation’s help this week, Desiray became the proud new owner of the stroller-style wheelchair. It came in a pinkish purple color, perfect for a little girl with a touch of diva; she swung one arm sassily onto her hip as she posed Monday for photos.

“It’s a huge help,” Carol Gallerani said of the chair before taking a trip with Desiray to Deering Oaks Park. “She’ll be able to do so many things she wasn’t able to do before. She’ll get to spend a lot more time outside. This chair is much more durable, so it’ll grow with her and we can use it for a while. It’s going to give her a lot more freedom.”

The Robbie Foundation was created in 2010 by Bob and Lynn Gierie and their son, Robbie, who has cerebral palsy. Lynn said the foundation receives far more applications than it can support — last quarter it funded over $10,000 for families in need, but received requests totaling over $95,000 — and sets priorities based on a child’s safety and medical needs.

Desiray couldn’t travel safely on a school bus in her previous chair due to its lack of a lock-down system, requiring other modes of transportation and making her ineligible for field trips.

“This was a pretty urgent need. Even going out into the community was a real challenge for her mom,” said Lynn Gierie, who is planning a Sept. 13 5k run on the Back Cove Trail and an Oct. 17 gala at the Black Point Inn in Scarborough to support the foundation. “We hope to bridge the gap for families in need of this adaptive equipment.”

Story by Brendan Twist | The Forecaster

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Video coverage from WCSH 6