Jump for Brielle raises awareness, medical funds for Sturge-Weber

By Matt Bower
Posted 6/30/16

Watching Brielle Coutu, an 18-month-old girl from Coventry, bounce around June 17 at the Launch Trampoline Park in Warwick, you would never know the young girl has endured nine seizures and one …

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Jump for Brielle raises awareness, medical funds for Sturge-Weber

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Watching Brielle Coutu, an 18-month-old girl from Coventry, bounce around June 17 at the Launch Trampoline Park in Warwick, you would never know the young girl has endured nine seizures and one stroke due to a rare neurological disorder known as Sturge-Weber Syndrome.

Without a care in the world, Brielle crawled, jumped, and bounced along with her friends and family, including her parents, grandmother, and cousins, at Launch, which was hosting a Jump for Brielle fundraiser to help support Brielle and spread awareness of Sturge-Weber. Twenty-five percent of sales from 4 to 8 p.m. at Launch last Friday were donated to Easter Seals Rhode Island, Boston Children’s Hospital, and the Sturge-Weber Foundation.

“We’re very excited with all the help that has been given to us with the fundraiser and doing extra by donating 25 percent of tonight’s sales and a basket for our raffle,” said Annette Coutu, Brielle’s grandmother. “We’re very grateful for Danielle’s help over the last three months putting this together.”

Danielle Dunn, community outreach and marketing manager at Launch, said the event has been a great experience for everyone involved.

“We’re all about family-first fitness. We’re here to give back to the community and to be a part of it,” she said, adding that Launch regularly hosts fundraisers like Jump for Brielle. “It makes us happy to do a fun night like this.”

Launch Trampoline Park is an indoor sports and family entertainment facility located at 105 Pace Boulevard, off Route 2, in Warwick. With more than 10,000 square feet of connected trampolines forming one giant jumping surface and angled trampoline walls to bounce off of, Launch encourages family wellness through entertaining fitness and offers a wide variety of physical activities, including open-jump time, group exercise classes, trampoline dodge ball and basketball, and foam pit fun.

Annette said they didn’t know how many people would show up for the event, but they knew that at least one family from Connecticut and one family from Massachusetts, one of them as far away as two hours, were planning to stop by to support the event.

While Launch wrote a check for $250 after generating $1,000 in sales for Friday’s event, Dunn said the Coutu family made close to an additional $1,000 on their own through a raffle and silent auction.

“We’re planning to do a jump-a-thon here next year,” Annette said.

Annette said the partnership between the Coutu family and Launch began after the family heard there were coupons for the trampoline park available through 92 Pro FM, so they went to check it out with Brielle.

“We could not get Brielle off the trampoline that night,” Annette said. “It was incredible to see how much energy she had while jumping.”

Annette said Brielle was born with a port wine stain on her face, which is an indicator for Sturge-Weber.

“There was a 15 percent chance she would have it,” Annette said. “Her dermatologist did an MRI when she was 1 month old and it came back as Sturge-Weber.”

Annette said Brielle had nine seizures when she was 3 months old and was hospitalized at Hasbro Children’s Hospital. Nearly one year ago in May, she had a stroke, which left her with permanent brain damage.

“It shrunk the left side of her brain, but the right side said ‘we’re going to do this, we’re going to walk and talk,’” Annette said. “Brielle’s physical therapy and occupational therapy [through Easter Seals Rhode Island] has pushed her along to do things she may not have done otherwise.”

In addition to raising awareness of Sturge-Weber and reaching out for support, Friday’s fundraiser event was also to help with the medical costs associated with Sturge-Weber.

“Without insurance, it would cost hundreds of thousands of dollars,” Annette said. “It will cost $45,000 just to take care of the port wine stain.”

Annette said Brielle visits her Sturge-Weber team at Boston Children’s Hospital once a month, where one of her doctors there is on the Board of International Research for Sturge-Weber, however the family recently received a letter informing them their insurance will no longer cover those visits.

“The next nearest location [for Sturge-Weber care] is in New Jersey, which is a long trip for a child with sensory challenges,” Annette said. “We don’t want to lose her doctor or the rest of the team.”

Despite the challenges the family has been faced with, Annette said they’ve been lucky to have a good team of doctors and to receive support through events like Friday’s fundraiser.

Despite how rare it is, Annette said they know Brielle isn’t the only child in Rhode Island with Sturge-Weber.

“There are only a couple of kids in Rhode Island with Sturge-Weber. We’ve reached out to connect with the other families to help them with what they’re going through, but so far we haven’t been able to connect with them,” Annette said. “Very few people with Sturge-Weber Syndrome do anything alike, so we’re lost as to how to help, apart from reaching out and spreading awareness.”

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