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‘Mighty Milo,’ baby with rare genetic condition, discharged from hospital

Amber Foster watched as her son Milo was prepared for his discharge from Franciscan Children’s Hospital Tuesday morning.
Amber Foster watched as her son Milo was prepared for his discharge from Franciscan Children’s Hospital Tuesday morning.John Tlumacki/Globe Staff

After months of intense treatment for a rare genetic condition, 7-month-old Milo Alligood was discharged from Franciscan Children’s Hospital in Brighton on Tuesday morning.

The hospital staff gathered around as family members wearing shirts that read “MIGHTY MILO” prepared to bring Millo home to the Berkshires for the first time since his birth.

His parents, Amber Foster and Christian Alligood, will introduce their baby to his big brother, Eli, for the first time. On Tuesday morning, Milo couldn’t stop smiling.

“I think he knew it was a happy day,” said Dr. Elisabeth Schainker, the hospital’s associate chief medical officer, who began working with the family four months ago. Her goal was to get Milo to a point of clinical stability and to make sure his parents were adequately trained to manage his medical technology from home.

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Milo is one of 20 patients worldwide to be diagnosed with HIDEA syndrome which is characterized by a range of symptoms, including lack of muscle tone, impaired intellectual development, epilepsy, and eye abnormalities. Patients require intense respiratory support.

Given Milo’s age and his rare condition, Schainker said, it’s impossible to know what the boy’s future holds.

“We’re taking it day by day and meeting him where he is,” she said.

Milo still needs a ventilator to breathe and a gastrostomy tube to get his nutrition. His parents underwent training to learn to change his tracheostomy tube, clean and monitor his equipment, and respond to any needs he may have. The training included a 48-hour stay at Franciscan Children’s during which Milo’s parents were his sole caregivers.

Schainker said it was important for his parents, who live in Adams, to experience caregiving for the first time knowing that supportive nurses were just down the hall.

“There’s a lot [his parents] had to bear,” said Schainker, who will continue to treat Milo and support his parents in the coming months. “They’ve shown such resilience and positivity. I’m so impressed with everything they’ve done to get to this day.”

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Schainker said it’s patients like Milo that make the stress of her job worthwhile.

“In the world of medical care, it’s important to have moments where you can recognize how important and happy a moment is in his family’s life,” said Schainker. “Day to day work can have a lot of ups and downs. You have to pause and smile because this is why you’re doing it all.”

For a moment on Tuesday, a hospital corridor was filled with joy as nurses lined the hallway, blowing bubbles and cheering while Milo’s parents carried him out of Franciscan and into the world.


Julia Carlin can be reached at julia.carlin@globe.com.