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This article was published in December 2012. The information may be out of date. Please check our epilepsy information or our site A-Z.

Matty's family become Health Heroes

18 Dec 2012

A beach on Rhode IslandThe family of a young boy in America who died as a result of his epilepsy has received the 2012 Health Heroes award from WebMD. Richard and Debra Sivaro from Rhode Island received the award for their work on The Matty Fund. This is an organisation founded in memory of their son Matty, who died in 2003 aged five. Matty had epilepsy, as well as other special needs.

After years of trying different treatments, Matty had brain surgery in May 2003 to try and reduce his epilepsy symptoms. Although the surgery was successful, he had a seizure afterward that lasted over an hour, resulting in cardiac arrest and massive brain damage. Matthew died on May 11 surrounded by his family.

Deciding to make something positive out of his death, Matty’s parents founded The Matty Fund. His mum Debra says: “When Matty was diagnosed, we struggled to find support locally. We can’t think of a better way to honour Matty’s life than by sharing our experience with other families and providing them with the support they so desperately need.”

Today, the fund has raised over $1.5 million. It provides help to other families by providing information to deal with epilepsy. It also provides workshops, support groups, epilepsy awareness programmes in schools, money for research and scholarships for local children with epilepsy.

Little boy holding hands with his dadMore recently, the Sivaros have set up Camp Matty. This is a therapeutic horseback riding day camp for children with epilepsy. It is designed to allow children and caregivers to have fun in a safe environment, as well as benefit from the therapeutic element of horseback riding.

As Health Heroes, the family received a $2,500 award from WebMD to give to a charity of their choice. They chose to donate the money to The Matty Fund.

“The Matty Fund will use this money to enhance its epilepsy resource centre for children and families. We would like to install a state of the art audio and visual centre for educational workshops, medical presentations, and support group meetings,” said the couple.

Dad Richard says: “I know Matty is giving us a thumbs up. What started off as a way to cope with our grief has turned into an organisation that helps hundreds of families confront and cope with epilepsy for the first time. We’ve reached families across Rhode Island and beyond.”

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