Optimist Club donation to help purchase equipment for Fergus girl with Rhett syndrome
Family grateful for the generosity of the community
FERGUS – Gratitude doesn’t begin to cut it, said Melody Dekorte, after learning the Optimist Club of Centre Wellington-Fergus had made a $3,000 donation to help her daughter.
Scarlett, who is now 14, has Rhett syndrome, a rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments such as losing the ability to speak and walk, and difficulty eating and breathing.
Scarlett has recently started having seizures several times each day and night, which has been worrisome and exhausting for her parents.
“The seizures have been quite bad this winter and she’s been hospitalized a few times,” Dekorte said.
“This gift from the Optimists is super helpful. And it’s also a boost to our spirits. It gets discouraging living with a chronic disease. The hurdles are still there.”
The Dekortes started a GoFundMe page five years ago seeking help to get a wheelchair van. The van is very helpful and still going strong, Dekorte said.
But because Scarlett is growing, she’s outgrowing much of the medical equipment that has served her well for many years.
Last year the Optimists held a fundraising barbecue to benefit Scarlett and that allowed the family to buy a ceiling track, to help her get in and out of bed, and a toilet commode, which together rang in at more than $20,000.
Because of her illness, Scarlett can’t stand on her own and she’s outgrown the stander that helps prop her upright for 30 minutes a day, which is good for her bones and her sense of enjoyment.
Dekorte said they will use the Optimist money, plus government and Easter Seals funding, to purchase a new one.
She’s discovered an agency called “For the Needy – Not the Greedy” in Niagara Falls that sells used medical equipment at greatly reduced rates.
If they can find a stander there, the family might have enough money left over to do something fun with Scarlett.
They recently got approved to have nursing help overnight, which allows Dekorte and her husband a solid night’s sleep for the first time in years.
That goes a long way in helping the family cope as well, Dekorte said.
“Hard as this journey is, it’s always a surprise and a delight when people come out of the woodwork to help us,” she said.
“This donation from the Optimists came completely out of the blue and we couldn’t be more grateful.”
