`Their strength and their willpower outshines their struggles': Local mom helps start group to aid families of 'short gut kids'

By Kelcy Dolan
Posted 7/28/16

Nicole White's son, Kyrie, who has short bowel syndrome (SBS), has spent his first four years of life in and out of Hasbro Children's Hospital. From the very beginning, there were few resources for children suffering from the condition.

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`Their strength and their willpower outshines their struggles': Local mom helps start group to aid families of 'short gut kids'

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Nicole White’s son, Kyrie, who has short bowel syndrome (SBS), has spent his first four years of life in and out of Hasbro Children’s Hospital.

From the very beginning, there were few resources for children suffering from the condition. White wanted to do more to help other families, like her own, struggling to provide the best life for their “short gut kids.”

Now she and a mother from Connecticut, Ann Alford, have established the Pediatric Division of the Short Bowel Syndrome Foundation (PDSBSF) to provide support for new families of children with SBS.

The syndrome refers to when an individual has less of their intestinal track than they are supposed to, and can be cause by numerous conditions, such as necrotizing enterocolitis, intestinal atresia, volvulus or malrotation.

Kyrie was diagnosed in utero at 14 weeks with gastroschisis, which means his abdominal wall did not properly close around his intestines, leaving them outside of his body. Upon birth it was discovered that a large portion of his intestine was not viable and had to be resected, or cut out. Kyrie was left with 12 centimeters of intestines, where infants are typically born with about 250.

Because there is not enough intestine, Kyrie, like other “short gut kids,” cannot properly absorb nutrition from food. Those with the condition are often dependent on total parenteral nutrition, or TPN, and other various intravenous nutrition supplements, but a side effect of this can be liver failure. Throughout the first several years of his life, Kyrie suffered constant vomiting and diarrhea from his body’s inability to absorb nutrients.

Kyrie has undergone more than 15 surgeries but has been able to begin eating orally and overall has been doing very well. He has even been named the 2016 Children’s Miracle Network Hospitals Rhode Island Champion by Hasbro Children’s Hospital. He and his family will act as advocates for the hospital and SBS for the next year, raising awareness for the condition. They even visited Washington, D.C., in June to share their story on a national stage.

Although Kyrie is doing much better now, White explained that it was nearly impossible to receive help. She and her husband began applying Kyrie for disability at only two weeks, but they were denied because together they made $100 more in income than the cutoff. The income was all that was considered, not the cost of the condition, which requires expensive medicine, specialty food, hospital stays, and a high volume of diapers. Similarly, they weren’t eligible for diaper assistance because although the family went through more than the average number of diapers a day, Kyrie wasn’t over three. White said at points, she and her husband were advised to quit their jobs or get a divorce in order to qualify for more assistance.

“It’s a tough situation to be in. Every day is different. You wake up thinking things are okay, try to go to work, make a 40-hour week job, and then life throws you a curveball,” White said.

White wanted to create a non-profit that would be able to help families like her own that are struggling to provide the best care for their children with SBS. She reached out to local philanthropists as well as Hasbro leadership and the CEO of the SBSF, Andrew Jablonski, a 30-year-old with the condition.

Now White, with her partner Alford, has established the Pediatric Division of the SBSF to help new families to the condition. It seeks to provide emergency financial assistance, diaper assistance, a support network of other parents, new patient packages, as well as education and awareness of the condition.

“It is always hard with short bowel syndrome, because food is your medicine, but those first few years are the toughest, when your body has to adjust to the type of food you’re eating and you are constantly in and out of the hospital. So, we know we have a lot of work head of us moving forward,” White said.

To kick-start the non-profit, which was established only a month ago, White and Alford are hosting their first fundraiser with a Funny 4 Funds comedy Show at the Newport Marriott, with a goal to raise $30,000.

Looking ahead, White would like to establish something similar to The Tomorrow Fund Clinic for SBS patients, because their diagnosis is a lifetime condition with a “life consuming” dependency on nutritional care.

“So much of these patients lives are spent in the hospital. It would be nice to have a home for them where they can receive care,” she said. “These kids face so many challenges throughout their lives, but their strength and their willpower outshines their struggles…We take for granted that we can eat and drink without thinking about it. People don’t realize how important the intestines are. These kids are living on pumps for nutrition. Some of them never eat real food. Imagine not being able to eat.”

Nicole said it is exciting to finally have the non-profit distinction after six months of hard work. She and Alford are excited to get up and moving to begin assisting families across the country.

The fundraiser for the Pediatric Division of SBSF will be held Friday, Aug. 5, at the Newport Marriott, located at 25 America’s Cup Ave. in Newport. The doors will open at 6:30 p.m. for a cocktail hour. The Funny 4 Funds comedy show will begin at 7:30 p.m. and run for about an hour and a half. Tickets are $25 per person.

For more information or to purchase tickets, visit the Facebook page “Short Bowel Syndrome FND Pediatric Division.”

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