6-year-old girl from Queens advocates for funding for Type 1 diabetes research on Capitol Hill
By CeFaan Kim
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NEW YORK, New York (WABC) — A young girl from Queens is proving that even the smallest voices can have a big impact.
In the middle of summer vacation, your typical New York City kid is splashing into a pool, but not Snow Segarra.
The 6-year-old from Bayside, Queens instead strolled the halls of Congress trying to convince lawmakers on Capitol Hill to renew funding for Type 1 diabetes research.
The money would be used for the special diabetes program.
Type 1 diabetes or T1D is an incurable, insulin-dependent condition impacting 1.5 million Americans.
That’s why Segarra was one of 160 kids and teens from across the nation meeting with members of Congress this week, advocating for renewing T1D research federal funding.
The hope is that soon, a cure can be found.
“We’re home schooling now. She’s been in school since she was 2 years old,” said Segarra’s mother Josephine Velazquez. “That’s obviously very sad for her. She’s very social but there was just not enough help in school. Not enough education on how to take care of her. A lot of things that she missed out on that takes an emotional toll. If there’s a classroom birthday party and there’s cupcakes, my sugar can go high if I eat cupcakes.”
Velazquez has also had to make her own sacrifices.
“I left my career of almost 17 years,” she said. “I started working from home a lot of be close to the school. So, I’d post up in a coffee shop nearby and I’d get calls maybe like four times a day to please help out and I’d go over to the school and finally home school.”
“There’s no days off associated with Type 1 diabetes,” said Chris Aiuto of Breakthrough T1D. “It is a 24/7 operation. You’re constantly monitoring your blood sugar; you’re counting your carbohydrates. You’re trying to determine what types of activities may trigger your highs your lows.”
Aiuto is an executive board member of the New York City chapter of Breakthrough T1D, which sent Segarra to Washington.
He’s also the father of a 10-year-old with T1D.
“I would love nothing more than to give him the gift of a cure, so he no longer has to deal with this anymore,” Aiuto said. “There’s very promising trials that are ongoing and we’re really optimistic that we really can see in our lifetime.”
The $160 million funding had been in place for more than 20 years, but it expired and then was extended until September.
Advocates stress the importance of the money being renewed before September, so it doesn’t interrupt ongoing studies.
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