Wilton Mom to Hold Fundraiser for Daughter with Rare Disorder

WILTON, CT — A Wilton mother is hosting a fundraiser for her 10-year-old daughter who has a rare medical condition called Smith-Magenis syndrome, or SMS.

Jennifer Iannuzzi, mother of Sydney and founder of The Smith Magenis Research Foundation, writes on her blog that her daughter's rare chromosomal condition causes speech and developmental delays, tantrums, sleep disorders, diminished muscle tone, ADD and more.

"I had been anxiously awaiting for 6 weeks for the result of Sydney’s micro-array, a test to determine if there are any problems with her genetic material. Sydney Emma was diagnosed that day with Smith-Magenis syndrome (SMS). It is a rare microdeletion syndrome— a small but critical piece of genetic material is missing," Iannuzzi said.

According to the National Organization for Rare Disorders, Smith-Magenis syndrome (SMS) is "a complex developmental disorder that affects multiple organ systems of the body....characterized by a pattern of abnormalities that are present at birth (congenital) as well as behavioral and cognitive problems."

Smith-Magenis syndrome was first discovered in 1982 by Ann Smith, a genetic counselor, and Dr. R. Ellen Magenis who identified nine patients with the disorder, NORD stated.

"It is frightening to learn that your child is afflicted with something that has profound repercussions on her global development and future but it is downright horrifying to learn that no one in your circle of support had ever heard of this or had any insight into what to do next or even what to expect. I heard things I was not emotionally ready to hear and it became painfully clear to me that I was going to have to find an inner strength that I was not at all confident I had," Iannuzzi said.

Sydney's family is holding the "Lights, Camera, Research" fundraiser on Saturday, June 18 in Ridgefield to benefit their research foundation and to raise awareness for the disorder. The event will be held at Ridgefield's Prospector Theater. There will be a balloon maker, face painting, a silent auction, refreshments and a screening of Pixar's new movie Finding Dory.

Tickets are $30 for adults and $20 for children.

To purchase tickets visit www.lightscameraresearch.kintera.org.

Image via 'Strength for Sydney' Facebook page