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Community rallies for Natick girl raising money for service dog

Boston Herald - 5/5/2019

May 05-- May 5--A Natick family is raising money for a service dog that will help alert them to their daughter's seizures.

Sam Leone said her 10-year-old daughter, Nina, was diagnosed with autism at 17 months. By the time she was 3, Nina started having life-threatening seizures during which she stops breathing. In 2016, Nina was fainting every three minutes.

Doctors at Boston Children's Hospital diagnosed Nina with Pitt Hopkins syndrome, a rare genetic condition that can cause breathing problems and recurrent seizures -- all while taxing her body, Leone said. This January, the Leone family was transferred to Massachusetts General Hospital, where Nina was determined to be one of 17 children around the world to have this orphan disease.

"After conducting her genomic sequencing in your body, they had decided that there were 16 children in the world that had 10 of the 12 things Nina had," Leone told the Herald. "She's No. 17 in the world, and they haven't even named it yet."

"This past October, I knew when she started having breakthrough seizures, the medicine she was on wasn't helping," said Leone. "I knew I couldn't stay awake and watch her sleep, waiting for the next seizure to come. Doctors had suggested a seizure alert dog, which is expensive."

The dog, currently in Mesquite, Nevada, would be able to see when Nina is about to faint -- the veins in her neck pop out -- and the dog will be able to touch her and remind Nina to breathe. "If the dog gets there too late, the dog will be able to get beneath her and break the cycle of seizures when it starts," said Leone. "When the dog is sleeping with her and there's a seizure, it can come to us and let us know. We only have five minutes before we can get her the medicine ... the dog would be a lifesaver."

On Saturday night, the Leone family held a benefit at Kings Dining & Entertainment in Dedham, a favorite hotspot for Nina as bowling is one of her favorite pastimes, and saw more than 200 guests raise money for the seizure alert dog.

A GoFundMe page to raise money for Nina's service dog has a goal of $75,000 and had raised more than $20,000 as of Saturday evening. Leone said funds will pay for the dog and training, about $26,000; maintaining the service dog, about $2,000 a year; and a fenced-in yard to keep Nina and the service dog safe, about $12,000.

"We live in Natick, and Mr. Rogers did not adequately prepare for these people in my neighborhood and my community," said Leone of the community outreach. "It's not even just the people in our community, which I cannot begin to thank. It's just incredible. I'm so overwhelmed, and many of them don't even know Nina, but to me, she's become everybody's daughter. I've never been one to ask for help because it's difficult, and when it comes, I don't even know how to thank people."

Nina, known to her family and friends as "Baby Girl Butterfly," was coined by Leone because when she was first diagnosed, "she never laughed."

"We were in our yard one day when she was 2 years old, and she was chasing this butterfly, and every time she couldn't catch it. Every time she'd go to catch it, the butterfly would move, and she would belly laugh," said Leone.

"I know she'll be taken care of. I don't even know how to thank my gratitude from my family to everyone that came out to support Nina," said Leone.


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