On Mother’s Day of 2010, our daughter, Lorelai, experienced her first seizure, while on vacation in Florida. Doctors at Hasbro Children’s Hospital, in Providence, initially diagnosed her with Infantile Spasms – a severe neurological disorder also known as West Syndrome.
While waiting for treatment, her seizures continued to worsen, with tonic/clonic seizures occuring in multiple clusters throughout the day. For additional help, we reached out to the Neurology Team at Children’s Hospital Boston. It was there that she was diagnosed with generalized epilepsy and started therapy immediately.
Through the dedicated care of her medical team at CHB, she has been able to remain seizure-free for more than a year. In the last 9 months, Lorelai has recovered much of the developmental regression that occured during the period of seizure activity and she contunues to grow and develop into a beautiful little girl.
Since Lorelai’s diagnosis and our introduction to the Siravo Family, The Matty Fund has been a growing part of our lives and a huge help to our family, offering support, resources, and guidance. Over the last two years, The Matty Fund has not only provided our family with loving support, but has also helped us navigate the complicated world of medications and doctors. We have experienced their generocity first-hand, through the Discovering My Epilepsy Support Group, their promotion of epilepsy research and hospital funding – including donations to CHB, - and their heartfelt welcome to the epilepsy community in Rhode Island.
We have decided to return the support that The Matty Fund has offered by establishing a team in Lorelai’s name and committing ourselves to rasing $1500 to help prevent, control, and cure Epilepsy. Your generous donations will not only help us achieve our fundraising goal, but will help The Matty Fund continue to offer – and develop new – important programs and services to help children and families, like ours, touched by Epilepsy.
"Any day without a seizure is a great day. Enjoy it. And think of a seizure-free day, week, month, or year as a personal victory to be shared with others."
Thank you, in advance, for your generous support.