5-month-old hospitalized with rare genetic disorder heads home just in time for Father's Day

ByMarcus Solis

Wednesday, June 12, 2024

5-month-old finally heads home following hospital stayMarcus Solis has the story of a family in Connecticut that will enjoy a very special Father's Day this weekend.

WESTCHESTER COUNTY, New York (WABC) -- A Connecticut family got an early Father's Day gift, one they've been anticipating for awhile.

Tom Box and his wife Alicia got to take their 5-month-old daughter Ella home on Wednesday after she was released from Westchester County's Blythedale Children's Hospital.

"Very emotional," Tom Box said.

Ella was born with Congenital Central Hypoventilation Syndrome, a rare neurological disorder where the brain doesn't signal the diaphragm to breathe properly. The tracheotomy for Ella's ventilator and feeding tube are needed to manage the disorder.

The Box's had to complete months of medical training needed to keep Ella alive.

"At first it was very intimidating," Alicia Box said. "Now we can change her trach or her g-tube like we change a diaper."

Ella was admitted to Blythdale shortly after her diagnosis, but has already doubled her birth weight.

"She'll be able to do everything neuro-developmentally," said Blythedale Children's Hospital's Dr. Dennis Davidson. "She'll be able to sit up, she'll be able to walk. She'll be able to do all those good things."

It will be a long road ahead figuratively for Ella, but for it's been all worth it for the Box's. Tom and Alicia have had to drive an hour and a half each way from their home in Litchfield, Connecticut.

"Just being home as a family under one roof," Tom Box said when asked what he's looking forward to most with Ella coming home.

Alicia Box added her and husband Tom were frightened by the initial diagnosis -- which was worst case scenario -- but they are still in awe of the getting to this point.

"Standing here, I can't even believe we're as comfortable as we are taking her home," Alicia Box said.