East TN family starts charitable foundation as daughter battles rare disease
KNOXVILLE, Tenn. (WATE) — It was a packed house at Yee-Haw Brewing in North Knoxville as hundreds gathered to show their support for the Begbie family and others who have children with Sanfilippo syndrome.
Rowan Begbie's parents, Bryan and Blair, said their daughter is fearless and loves her family as she battles this disease that's described as childhood Alzheimer's.
'She's so full of life. She loves people. She connects with people. She loves her siblings so incredibly much,' Bryan and Blair said. 'She's fearless, which can be a bad thing. Right now, she's just doing so well.'
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Rowan, was diagnosed with Sanfilippo syndrome last year. The three-year-old and her family now making numerous trips to North Carolina to take part in a clinical trial.
'There's only about 12 kids in the U.S. receiving this specific treatment,' Bryan explained. 'We drive there the afternoon before infusions, then we have a full infusion day from 7:00 a.m. to 5:00 p.m. and then we drive home. We couldn't be happier with the team of physicians and nurses that care for her.'
What is Sanfilippo syndrome? It is a rare genetic disorder that affects the brain and spinal cord. This disorder impacts one in 50,000 to one in 250,000 people worldwide and has a variety of different symptoms.
'MPS, or mucopolysaccharidosis, is a metabolism disorder where Rowan does not produce the enzyme that breaks down a toxin that builds up in her body, primarily her brain, which leads to behavioral issues, cognitive decline and a number of other unfortunate symptoms.'
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The Begbie family has started a foundation in Rowan's honor called the Rowan Tree Foundation of East Tennessee as a way to help raise money to find a treatment for Sanfilippo and help other families who have children with the disorder. Bryan and Blair said the support they have received, not just during the event, is incredible.
'It's overwhelming, we've seen friends and people from every corner of our lives show up for us over the last year and it's been absolutely amazing,' they said. 'We have super generous and talented people that surround us and love us that helped us put today together.'
The family told 6 News that there are five families in East Tennessee that have a child with Sanfilippo syndrome. Bryan said they initially got a call from a mutual friend with concern about Rowan on April 1 last year. They did the genetic testing which showed the mutation for the disease, and she was officially diagnosed on April 26.
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Money spent tonight on merchandise, silent auction and drinks will go toward research for Sanfilippo syndrome.
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