TAUNTON (CBS) – Flu season is here, and for a Taunton family with two babies battling a rare disease, the months are particularly stressful.
From the outside, they appear picture-perfect: Amanda and Billy Bettuchi and their three beautiful kids. But you can’t tell a whole health story just by looking. “It’s Severe Combined Immunodeficiency (SCID), so Shane was born with no immune system at all. They have to go through chemo first for 10 days and then they get the bone marrow transplant after that at three months old,” mom Amanda (Acorn) Bettuchi explained.
Sweet Shane, not even a year old, is still recovering. The couple is holding their breath his bone marrow transplant worked. “A lot of the chemo could burn his body. It could burn us so we couldn’t hold him for a lot of it. He lost all of his hair. Eyelashes everything. That was very sad,” she added.
And just as they felt some hope, more heartache. After a third healthy pregnancy, newborn Declan was diagnosed with the same rare disease.
“We cried a lot. A lot of tears were shed. We’ve been through it before. We’ve been trying to stay positive with everything,” Amanda said.
Just weeks old, Declan’s too young still for the treatment. That means many more months the couple can’t leave to work, and no one — no germs — can come into their home.
“Around Christmastime everybody drops the gifts at the door. That’s hard,” she said. Being isolated in their home is especially difficult for their oldest child, three-year-old McKenzie.
The vulnerable babies can’t have any vaccines yet. The couple hopes their story brings some awareness this cold and flu season – illness isn’t an inconvenience; for some, it’s life and death.
“You could have the flu and not know about it. You could have a cough and it means nothing to you but the world to this child with no immune system. Everybody wants to touch your baby. Everybody wants to tell you how cute they are. As nice as that is, you can’t,” the mother explained.
Dad Billy was nearly a perfect match for Shane’s bone marrow transplant, but isn’t a match for new baby Declan. That leaves the newborn waiting on the donor registry. If you’d like to support this young family during these frightening months treating their babies, you can learn more of their story and donate here.