By Jesse Buchanan – Meriden Record- Journal

When the speaker stopped working on an iPad used by the Connecticut Children’s Medical Center to help teach pronunciation, 10-year-old Gavin Haines wanted to get a replacement. Since then his fundraising — which has included bake sales, donations from businesses, and gift wrapping — has bought two iPads for the center’s speech class.

Gavin suffers from two disorders and during his first few years was at the children’s hospital several days a week, according to his mother, Stacey Haines.

Since last fall, he’s raised $5,500 for the center and he hopes to reach $10,000.

“When I saw other kids fundraising, I thought we should do that too,” Gavin said.

He has both Dravet syndrome and cortical dysplasia and has been told by doctors that he’s one of only five known cases where both are present.

Dravet, a form of epilepsy, results in seizures that usually last between 20 and 40 minutes. Haines said her son has had seizures as long as 6 hours, and their home must be outfitted with medicines and oxygen in case the attacks become life-threatening.

 Gavin and his mother describe them as an electrical storm in the brain. It can lead to temporary memory loss, among other things.

“One day I may know how to add 100 and 100, but the next day I might not,” Gavin said.

Haines homeschools Gavin, saying it’s more conducive to her son’s unpredictable health condition.

Dravet syndrome affects all different areas of the brain. A seizure can lead to muscle problems on the right side one day and cause headaches the next, according to Haines.

“It can start anywhere, it can travel anywhere,” she said. “It can really mess with him.”

Cortical dysplasia is a congenital brain abnormality and commonly a cause of epilepsy. Many medicines that treat that disorder worsen Dravet syndrome while medications designed to combat Dravet are bad for patients with cortical dysplasia.

Gavin sees a host of doctors at the Connecticut Children’s Medical Center while also receiving treatment and testing there. Haines praised the doctors and staff, saying they were knowledgeable as well as caring for her son.

Through friends, Gavin and his family have been able to set up fundraisers through businesses such as Outback Steakhouse, Boscov’s and Dave & Busters. Money raised at all three went to the medical center.

Brian Neviolo, owner of Giovanni’s Pizzeria on West Street, said Gavin asked if the shop could post a flier in the window for a bake sale fundraiser. Neviolo said his son received treatment at the children’s hospital and was glad to post the fliers as well as make a donation.

“We really liked the doctors over there,” Neviolo said.

He was impressed with Gavin’s maturity.

On Tuesday, Gavin and his mother met with a manager at 7-Eleven on Queen Street in Southington to talk about a cold brew ice tea and lemonade stand for the location. The company agreed, Gavin said, but a date for the stand hasn’t been set yet.

His older brother, Kyle, also designed bead bracelets that Gavin has sold as part of his efforts.

Haines said her son was inspired after seeing University of Connecticut students raising money for the medical center at Huskython. Gavin has put in “hours upon hours” helping make baked goods, wrapping gifts during the Boscov’s fundraiser and selling tickets at other events.

“When he saw them raising money, he said, ‘I can do that too,’” Haines said.

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