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By KARA O'CONNOR

Villager Staff Writer


WILTON -- Four and a half years ago, Wilton resident Jennifer Iannuzzi's life changed forever, and she says she has learned that her life experience can bring inspiration to others.

"Since my daughter Sydney was born, my life has been changing day-to-day, and it has taken a while to cope with that," said Iannuzzi. "But after four years, I've learned that you can make an unexpected situation into a good one. And by doing that, I believe I can help others like myself."

On Sept. 5, 2007, Jennifer Iannuzzi's daughter Sydney was diagnosed with Smith-Magenis Syndrome (SMS) at 21 months old. SMS is a recognizable pattern of physical, behavioral, and developmental features which occur together in the same person due to a small deletion of chromosome 17, according to the Parents and Researchers Interested in Smith-Magenis Syndrome (PRISMS) website. It is estimated that SMS occurs in 1 out of 25,000 births, the website states.

Some common features of SMS include: characteristic, yet subtle, facial appearance; infant feeding problems; low muscle tone; developmental delay; sleep disturbance; self-injurious behaviors; prolonged tantrums; explosive outbursts; speech/language delay; ear infections; arm hugging/hand squeezing; and decreased sensitivity to pain, the website states.

Since Sydney was diagnosed, her biggest issue is and will always be emotional behavioral modification, Iannuzzi said.

"When Sydney is older, she will be able to carry on a conversation and will cognitively advance," said Iannuzzi. "But she and other children with SMS will not be able to emotionally move past the level of a 2-year-old. That is the biggest issue with SMS is that they will always have that barrier."

Dealing with SMS has been a challenge, Iannuzzi said, but it has also changed the way she looks at life.

"Life doesn't always turn out the way you think it will, and that takes some time to get used to," she said. "But since Sydney was diagnosed, I enjoy the little things in life more. I also have found a new focus in life, finding all the unanswered questions about SMS."

In June 2010, Iannuzzi co-founded the SMS Research Foundation with another family in Florida whose daughter was also diagnosed with SMS. The SMS Research Foundation is committed to finding out more information on SMS and how to treat it.

"My goal is to raise awareness on this syndrome," said Iannuzzi, "and find out how to diagnose and possibly treat SMS early in a child's life. Maybe it won't help Sydney, but if it helps one child with SMS in the future, than this foundation will be worth it."

On Sunday, Sept. 19, Iannuzzi is holding her first SMS Research Foundation fundraiser in Georgetown. Iannuzzi said she hopes the fundraiser -- a "spinathon" which will have participants riding stationary spinning bikes for pledges -- is the first of many.

"This is my first time really stepping out into the community and sharing Sydney's story,' said Iannuzzi. "I hope that people will realize that even though it's rare, SMS is a real syndrome. Right now, I'm just trying to get the word out there and hope that people will want to help."

The SMS Research Foundation's Spin-a-thon will be held at Elevation Studio, located at 4 Old Mill Road in Georgetown, on Sunday, Sept. 19, from 8 a.m. to 12 p.m. For more information on Sydney's story or Smith-Magenis Syndrome, go to www.strengthforsydney.org.

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