Allison and Ben Gauvin have been to hell and back, but they manage to keep their spirits up.
The couple from Connecticut lost their two children to a rare mitochondrial disease, but they believe that the tragedy made them better parents to their other children. They love Julia and Wilbur more intensely, grateful to have them alive.
When Beckett was born in 2010, he was fragile, cold, and weighed three pounds less than Allison’s oldest child Julia. He was immediately put in the neonatal intensive care unit
When Beckett found himself fighting to breathe, he was moved to Boston Children’s Hospital. It was here where Allison and Ben heard the strange name that would change their lives: pyruvate carboxylase deficiency. The rare metabolic condition was creating fatal acid in his body that would surely end his life and if not, result in severe retardation. Pyruvate carboxylase deficiency is one of many disorders in a group called mitochondrial diseases. To learn more, click here.
Amazingly enough, his conditions began to improve and he was finally able to return home and though he still faced several health issues, he had miraculously beat the odds.
Soon after, Allison learned that she was pregnant again. This pregnancy was closely monitored, and the doctors deduced that her third child, Clementine, would also be born with the same disease and she certainly was.
There was a sweet spot of two years, when Beckett and Clementine didn’t suffer extreme medical emergency. During this time, they flourished and socialized with others, like any other healthy children.
Allison and Ben became used to stares from strangers in public, but they never let it get to them. They wanted to make the most of their children’s lives, even if it meant more work. They provided them with speech therapy so that they could communicate, and even took them to the beach on wheelchairs so they could experience the ocean.
“I don’t think Beckett and Clementine had any less of a life,” said Allison to Today. “They were just great kids.”
Clementine passed away at the age of 2. Eight weeks later, Beckett followed her. Though they miss their children dearly, Allison and Ben are grateful to have spent those two years with them and have become even better parents to their other two children.
