(CBS) — A mother and father quit their jobs and left Chicago not for fun, but to save something precious, reports CBS 2’s Jeremy Ross.
Kristin Skenderi, husband Ozzie and 14-month-old baby Nixon are spending their first weekend back in the Chicago area after a frightening journey that began with what doctors told them was a death sentence. They are temporarily at Kristin’s mom’s house in Des Plaines.
they said enjoy your son because he will probably not live past the age of three,” Kristin said.
About nine months ago the family learned Nixon had Gaucher’s disease, which is when the body lacks an enzyme, leading to organ damage. It can be as fatal as it is rare
“He’s like one of 12 in the world,” said
But rather then move towards mourning — over the past several months couple moved from place to place to save their son.
At the Children’s Hospital of Pittsburgh, doctors performed an umbilical cord stemcell transplant. The process included chemotherapy, killing the disease but also Nixon’s ability to fight off infection.
The transplant offered a way to rebuild what Gaucher’s and treatment destroyed. It also rebuilt a family’s sense of hope.
“There’s nothing showing he has Gaucher’s disease anymore,” said Ozzie.
The Skenderis aren’t calling this a cure. Because of the rarity of Nixon’s case, doctor’s aren’t sure what his future holds. What they have said is his life expectancy is now greater than age three.