Matthew DiSimas - 19, Boston Massachusetts
Matthew suffers from a form of Progressive Myoclonic Epilepsy known as Lafora Disease. He showed no signs of illness until his 1st seizure at age13. He was an honors student and athlete who enjoyed football, hiking, mountain biking and snow boarding. Due to Lafora’s rarity (around 200 cases worldwide) it took over 3 years and visits to Children’s Hospital in Boston, Dartmouth-Hitchcock Medical Center in New Hampshire and the Hospital for Sick Children in Toronto to get a definitive diagnosis. Unfortunately the diagnosis is not the one we wanted to here. Lafora Disease is characterized by progressively worsening seizures and cognitive decline. It is typically terminal within 10 years of onset.
We are now focusing on Matthew’s quality of life and raising funds for Lafora research. Due to the disease’s scarcity, there is little funding to find a cure. We’ve held several yard sales and the Ride for a Cure Motorcycle run to raise over $6,000 for this cause.
Although Matt continues his battle with Lafora Disease we have managed to fit in a number of highlights.
The Make-A-Wish people arranged for a tour of Fenway Park where we got to watch batting practice from the field and watch a Yankees – Red Sox game. Matt met and got a ball signed by Reggie Jackson.
We submitted Mount Washington via the Cog Railway this summer. We toured the Niagara region of Canada and visited the Rock and Roll Hall of Fame in Cleveland. Matt’s goal has long been to attend Notre Dame University, so we took a trip to South Bend where he got a private tour.
Matt was elected Homecoming King and his classmates went out of their way to make it a very special weekend for him. In December, his classmates and the faculty held a variety night benefit fundraiser for Matthew. The whole Bishop Stang community has been wonderful to us throughout this whole ordeal.
- Provided by Matthew's Parents
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**Read the update on Caring Bridges for Matthew DeSimas at the link below
To view more updates about Matthew go to http://www.caringbridge.org/visit/matthewdesimas
**CaringBridge is a free, nonprofit web service that connects family and friends to share information, love and support during a health care crisis, treatment and recovery.
