As appeared in the Union Leader, June 10, 2006, page A6
Jesse Isabelle, 14, “A Gift of God” Dies
By: Riley Yates
Jesse Isabelle endured 23 major surgeries in his 14 years of life. When he was born, doctors said his time would be brief. He never complained about a host of medical problems that sent him in and out of the hospital, family members said yesterday. Not when he began to go blind at 10 years old. Not when younger kids he played with started to outrun him.
“He’s a miracle. He’s been a miracle since he was born,” said his mother, Carol Sheehan.
Yesterday, Jesse died at Perkins School for the Blind in Watertown, Mass., which he began attending this school year, an experience family members said had added even more zest to an already full life.
“We got used to the idea he was going to be around forever,” his aunt, Laurie Lawrence said.
“Because he’s beaten the odds so many times.”
Jesse – whose name means a gift of God – was born with Alagille syndrome, a rare chromosome disorder that affects the liver and other organs, including the heart, eyes, spine and kidneys. At five weeks, doctors told his mom he was too sick to go home. “She took him home and has been his nurse ever since,” Lawrence said.
Last night, the family gathered at the Walnut Street home of Jesse’s grandparents, laughing at memories and struggling against tears. They talked of a child who liked to challenge patrons of his mom’s restaurant to tic tac toe games. Who was always affectionate and loved to hug. Who decorated his rooms in Manchester and at Perkins School with Red Sox memorabilia.
On June 21, Jesse was scheduled to throw the first pitch at the Red Sox game, his mother said. He had recently toured Fenway Park with his class, and three years ago got to meet the team as a wish granted through the High Hopes Foundation. “He wanted to be a baseball player,” said Sheehan, who owns the Red Arrow Diner in Manchester.
“Baseball and artist like his Pops.”
“Pops,” stepfather Dennis Sheehan, said Jesse was also an avid bowler, piano player and swimmer. Strong of faith, he was the loudest singer in church.
“He would love you to death,” Dennis Sheehan said. “He was full of unconditional love.”
In February, the family moved back to Manchester, after living in Warner. Jesse had suffered a grand mal seizure on the back roads of town, and his mom said she wanted him to be in a place that offered full medical facilities.
Perkins School helped introduce Jesse, who was also deaf and wore a hearing aid, to other children who suffered similar medical problems, his family said. It opened up a new world for him. “He just started changing,” his mom said. “He was a different kid.”
This winter, Jesse won a competition designing a Christmas card for Perkins School, a card that gets sent across the world, his family said.
©2008 Union Leader Corporation, Manchester , N.H.