Cranston resident's nonprofit fundraises for children in need

By Allie Lewis
Posted 6/28/17

By ALLIE LEWIS For the few who ran, Saturday morning's showers could not put a damper on the efforts that went into fundraising for a good cause. Cranston resident Nicole White helped organize the first ever Short Bowel Syndrome Foundation for Children

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Cranston resident's nonprofit fundraises for children in need

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For the few who ran, Saturday morning’s showers could not put a damper on the efforts that went into fundraising for a good cause.

Cranston resident Nicole White helped organize the first ever Short Bowel Syndrome Foundation for Children of New England Inc. 5K Run/Walk in Roger Williams Park. White, serving as the first president of the newly formed nonprofit organization, set out to help raise funds for children and their families with Short Bowl Syndrome.

As the mother to a son with Short Bowel Syndrome, White knows just how financially taxing it can be for families to provide the essential care that children with this rare condition need.

White and her husband, Garrick, previously spoke with the Cranston Herald after their son Kyrie was named Children’s Miracle Networks Champion Child of Rhode Island by Hasbro Children’s Hospital in 2016.

Most of Kyrie’s intestines were not viable after birth due to an in utero birth defect, gastroschisis, in which the abdominal wall fails to fully close during development. The first few months of Kyrie’s life were spent living at Hasbro.

With treatment, however, Kyrie has gone on to a normal, happy life just like any other 5-year-old.

“Kyrie is a good representation of a child that has been through adversity, trials, and tribulations, but he did it all with a smile on his face,” Garrick told the Herald in 2016.

With the $1,100 rose from Saturday’s 5K, White said the nonprofit will be able to help one family with nutritional needs for an entire year. Each month they will be able to provided $75 stipend to the family in need.

Every little bit helps, but maintaining the life-essential, strict diet that those with Short Bowl Syndrome need can be expensive. White said she and her husband spend close to $700 a month for Kyrie’s nutritional needs.

With other small grants the organization has received, White said she is hopeful that they’ll possibly be able to help two other families with nutritional expenses.

In addition to trying to help families in need with nutritional expenses, White has also been trying to work with Hasbro to help improve the care for children with Short Bowel Syndrome.

“Their feeding program is nonexistent,” White said. “What I’m trying to do with Hasbro is help them coordinate the right therapists to provide the right therapies.” Since White reached out, Hasbro has been taking her input into consideration, meeting daily for sessions with the children and weekly to find ways to better manage their care.

In addition to the support White received at Saturday’s 5K from her own family and others touched by Short Bowl Syndrome in some way, her friends also rallied around her. Erica Busillo Adams and White met through Fountain Head RI, a group that not only helps provide members with leadership opportunities, but is also rooted in giving back to the community.

“I was super inspired by what she was doing for a cause I don’t think many people are doing anything about, or know about at all,” Busillo Adams said. “Her passion and how much she’s been behind getting this non-profit started and getting this event put together, I just think she’s amazing.”

Also supporting White from the early planning stages was her Vice President Ann Alford, who also has a son with Short Bowel Syndrome. Alford’s son Charlie, 21, was one of the main reasons Alford got involved with starting the nonprofit alongside White.

“He’s one of the oldest living people in the world with Short Bowel Syndrome from birth,” Alford said. “Twenty years, 25 years ago, they died. They couldn’t do anything with it.”

Thanks to an experimental procedure that saved Charlie’s life, thousands of other children’s lives have been saved as well. The procedure that surgeons developed saving Charlie’s life has been featured in 17 different textbooks, according to Alford.

Also braving the rain to show support for the cause and Kyrie was Maria MacLellan, a registered nurse at Hasbro Children’s Hospital. MacLellan has made a career of helping people and has cared for many children with Short Bowel Syndrome – most of who have to spend the first few years of their life living at the hospital.

“You become like their family,” Maria MacLellan, a registered nurse at Hasbro Children’s Hospital, said. “Nutrition is so important that some of them can’t go home.”

Total strangers also came out to pay a registration fee for a cause they deemed deserving.

“It’s a good cause to raise money for this organization that they’re trying to feed people with,” said first-place finisher Mike Daniels. In spite of the rain, Daniels said he wanted show up and support the cause because he knew many others would be deterred from coming.

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