6th Grade Walkathon Raising $$ for Charity after Classmate’s Personal Appeal [VIDEO]

As the middle child to big brother Ben and little sister Sydney, Middlebrook 6th grader Cole Iannuzzi knows a thing or two about being a sibling. But recently, according to his mom, he upped his sibling game, big time.

Cole’s sister, Sydney, has a rare chromosomal disorder called Smith-Magenis Syndrome (SMS), characterized by specific physical, developmental and behavioral features. Individuals with SMS can display any variety of the features, in different combinations and severity; some of the features include:  oral-motor dysfunction, cognitive impairment, chronic ear infections, eye problems, decreased sensitivity to pain, hyperactivity, impulsivity, aggression, endearing and engaging personalities, loving great sense of humor, sudden mood changes, and more.

Cole’s mother, Jennifer Iannuzzi, has been instrumental in starting the SMS Research Foundation, which was created to support research into SMS because until recently, not much has been known about the syndrome. Since its founding in 2007, the Foundation has been able to raise enough money to commit $600,000 to researchers at the Baylor College of Medicine.

While it’s been an effort the whole family has supported, it hadn’t really been something that Cole had taken the lead on, which is understandable–he’s 12, and sometimes having something that makes you stand out and be different can be difficult for any 12 year old. But with his Middlebrook grade organizing a fundraising effort, Cole stepped forward for a good cause.

Every year, sixth graders at Middlebrook host a walkathon in the spring, and each of the three 6th grade teams picks a charity for which they’ll walk to fundraise and donate money. The key is that they pick a charity from several options suggested by the students themselves.

After thinking about it for a couple days, Cole decided to suggest the SMS Research Foundation to his classmates.

On Cole’s Yellow team, there were 8 or 9 different charities suggested by the students, who either presented singly or with a group to pitch to their classmates for why his or her choice should be the one chosen by the team to support.

Cole prepared an original video about the SMS Research Foundation and about Sydney. “I was nervous about explaining it; my friends know what she has but the people who don’t it was kind of nerve-wracking to explain it to them,” he says.

The effort paid off–after everyone voted, Cole got the news that on Friday, May 1, when the 6th graders walk, the 6-Yellow team will be raising money for the SMS Research Foundation.

“I was really excited because I’m doing something right,” Cole says of finding out what his classmates had picked.

His mom Jennifer, was really pleased too.

“I was really excited that he did that, but it was really exciting that he wanted to do it, and that he could explain things to his friends,” she explains. “It was a good thing for him to get over. I know it’s been hard, and sometimes embarrassing or uncomfortable. He’s come a long way with it, so I was excited that he was willing to put himself out there.”

Part of Jennifer’s concerns surround are how rare SMS is and how hard that might be for Cole to talk about with his peers.

“Nobody knows SMS. Not only do they have to tell people that their sister has special needs, but then they have to explain what it is. With autism, there’s so much awareness these days, you can just tell someone and there’s no further explanation. But when they tell their friends, there’s an extra pressure to explain. And that’s what I felt for him. That’s one of their biggest challenges, because it’s so complicated to explain,” she says.

Getting support and affirmation from his classmates was powerful for the whole family, especially for Cole. For Jennifer, knowing that Cole’s classmates threw their support behind him, was moving on so many fronts.

“They’re a very caring, nurturing grade. And I think that because it was his sister, that brought it home. And it brought Cole a family feeling from them. I think it’s great that Middlebrook gave them this opportunity to pick the charity. Usually it’s planned for them and they’re told what the event is going to be. I think it’s more exciting to have a say in where their money is going.”

She also knows how empowering it was for Cole to be able to tell his friends about his sister on his own terms. “Each year both Ben and Cole get more comfortable sharing what SMS is, what the foundation is about, why we need money. I think Cole was at a point he felt more ready to do that.”

The fact that it was Cole’s choice meant so much to Jennifer too.

“I didn’t ask him to do this or bring it up. I didn’t say, ‘You have to do this.’ He did it. There’s got to be some ‘okay-ness’ inside of him to want to do this,” she says.

According to Cole, he knows why it’s important for people to know more about SMS.

“Then they don’t make fun of people who have it. And it’s important for them to donate because we’re trying to find a cure for SMS. That would be really great if there was a cure” he says.

For more information on the SMS Research Foundation, visit their website.