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Parent Diaries

 

Meet the Children of
Chelsea’s Hope

 

In Memoriam

“Those we have held in our arms for a little while, we hold in our hearts forever.”

Matthew DiSimas, Boston Massachusetts
(January 5, 1989-September 26, 2011)

South Coast Today, September 28, 2011

FAIRHAVEN — Matthew DeSimas, 22, of Fairhaven, MA, died on September 26, 2011 after a long and courageous battle with Lafora Disease. He was born in New Bedford on January 5, 1989, the son of Lisa Santos of Fairhaven and Steven DeSimas of New Bedford.

Matt grew up in Fairhaven and attended St. Joseph’s Elementary School, Hastings Middle School and Bishop Stang High School. He played for Fairhaven Little League and enjoyed roller hockey and golf. He was an avid outdoorsman who loved snow-boarding, skiing, hiking and mountain biking in New Hampshire. He loved his faithful pets; Ben and Jerry, Maxine and Fussy.

He enrolled in Bishop Stang High School and joined the football team. As the disease progressed and he was no longer able to play, the team rallied behind Matt and he became the team manager. He graduated from Stang in 2007 with the love and support from the students and faculty. In fact, Matt received his diploma bedside at Children’s Hospital with all the pomp and circumstance befitting a new grad.

Matt was diagnosed with Lafora Disease when he was just thirteen and for every day of the last nine years, he handled himself with courage and grace while this rare disease tragically cut short his life.

Matt is survived by his parents, step-father, Scott Santos, grandparents, Thomas and Aina Holden, Yvette DeSimas, and the late Herbert and Barbara Santos, Frederick DeSimas; as well as an aunt, uncles and cousins.

In keeping with Matthew’s memory, we ask you to share a smile and a story with someone today.

His Funeral Mass will be held on Friday, September 30, 2011 at 11am in St. Joseph’s Church, 74 Spring St., Fairhaven. Visiting hours on Thursday 4-8pm in the Waring-Sullivan Home of Memorial Tribute at Fairlawn, 180 Washington St., Fairhaven. Burial in River-Side Cemetery.

In lieu of flowers, donations in Matt's memory may be made to Friends of the Hospital for Sick Children, Toronto, Inc., c/o Roha & Flaherty, 1725 I Street, N. W. Suite 300, Washington, DC 20006-2423, or donate online at www.networkforgood.org - the donation is for “Dr. Minassian's Lafora research,” or to Bishop Stang High School, 500 Slocum Road, No Dartmouth, MA 02747. For online remembrances please visit: www.caringbridge.org/visit/matthewdesimas.

Biography

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 summited 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

Matthew DeSimasCaring Bridge: Matthew DeSimas
"Welcome to our CaringBridge site. It has been created to keep friends and family updated about Matthew’s battle with Lafora Disease. We’ve set this site up as the demands of his illness has kept us from keeping in touch as much as we should."
http://www.caringbridge.org/visit/matthewdesimas


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