Fundraiser planned for Cranston boy with small bowel syndrome

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A Family Day Fundraiser to benefit SBSNE Inc. Nutrition Support Program will be held Aug. 11 at Oakland Beach in Warwick. Hosted by Nicole White of Cranston and the President of the Short Bowel Syndrome Foundation for Children of New England, Inc., the event will be held from 3 to 7 p.m. The Fundraiser will include a car show, live band, kids activities, food, vendors, and raffles. Organizers are still actively searching for volunteers and vendors for the event.

My goal is to help and advocate for others who live with severe GI conditions, such as Short Bowel Syndrome (aka SBS), like my son Kyrie because I want to help make living their condition easier, by providing various forms of support, said White.

Her son Kyrie, who is 6 years old now, lost all but 12cm of his small intestine when he was 6 days old and was then diagnosed with Short Bowel Syndrome. Individuals with this health condition often say they "eat through their veins", meaning they depend on IV nutrition, called Total Parenteral Nutrition (TPN), to survive.

Short bowel syndrome is a group of problems related to poor absorption of nutrients. Short bowel syndrome typically occurs in people who have had at least half of their small intestine removed and sometimes all or part of their large intestine removed significant damage of the small intestine poor motility, or movement, inside the intestines. Short bowel syndrome may be mild, moderate, or severe, depending on how well the small intestine is working.

People with short bowel syndrome cannot absorb enough water, vitamins, minerals, protein, fat, calories, and other nutrients from food. What nutrients the small intestine has trouble absorbing depends on which section of the small intestine has been damaged or removed, said White.

Many who are diagnosed with SBS, also have feeding tubes, depend on special formulas and drinks, and blends of real food to sustain because their bodies need the extra help to maintain their nutrition and ultimately, stay out of the hospital.

Kyrie didn't eat by mouth until he was just over three years old and was able to come off the IV nutrition when he was 5 1/2 years old due to the help of a blended diet of real food and the love and dedication from his family, said White.

As of three weeks ago, Kyrie has had to go back on TPN.

Although this was a blessing for the White family, maintaining the cost of Kyrie's nutrition can become challenging, coming to about $700 per month out of pocket, for something that is medically necessary and critical for his future.

The White family personally saw and felt the dire need for more of a solid foundation of support and advocacy for individuals with these conditions and she formed SBSNE, Inc.

One program we are proud to have started, is the Nutrition Support Program, said White. With this program, SBSNE, Inc. provides families/individuals a small monthly stipend to help towards nutrition costs.

The fundraiser will consist of a Car Cruise hosted by Cruisin Bruce, followed by a live cover band, Alter Ego. There will also be family/kid friendly activities such as face painting, prizes, including a workshop put on by Endless Beautiful; creativity with art, food, and more. Some vendors include Averys Angels Gastroschisis Foundation, Endless Beautiful- Art workshop, Anchored Soul RI, LuLaRoe, SeneGence/Lipsense, MaryKay and Brazilian Way Fitness.

For more information, contact Nicole White, President of the Short Bowel Syndrome Foundation for Children of New England, Inc., P.O. Box 100171, Cranston, RI 02910 or call 935-9501. She may also be reached via email at Nwhite@sbsne.org.

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