Jennifer Allison breathes through a contraction before giving birth to her daughter Sky 19 months ago. Sky was born with heterotaxy, a series of rare birth defects, and doctors warned that she might not make it past her toddler years. Allison wanted to "carry Sky as far as she wanted to go," said photographer Ash Adams, who has been documenting the family's struggle since Sky's birth.
Ash Adams
Allison bathes Sky for the first time, six days after her birth.
Ash Adams
Allison soothes Sky the night before a surgery. Sky has already had three open-heart surgeries and two invasive surgeries on her intestines. Parts of her heart will need to be replaced.
Ash Adams
Allison's husband, Aaron, tired from a long night of work, listens to his wife talk with doctors in Anchorage, Alaska. Sky's heart stopped in the early morning hours that day, so she was rushed by ambulance to the hospital.
Ash Adams
Sky, one hour after a surgery. Doctors gave her a 15-20% chance of surviving her first year.
Ash Adams
Sky's sister, 4-year-old Story, looks out of the window in Sky's hospital room.
Ash Adams
Allison holds Sky inside a hospital room.
Ash Adams
In order to keep up with Sky's tube feedings outside the hospital, Allison has rigged a holder in her shoulder bag's pocket.
Ash Adams
Allison puts on makeup while Sky sleeps at the Ronald McDonald House about a month after a surgery.
Ash Adams
Allison went out to pick up ingredients for Sky's birthday cake, and when she returned she was surprised to find a beautiful cake already there. Her friend, Susan, had dropped it off while she was out.
Ash Adams
Allison walks to the market with Sky on the day before her third open-heart surgery.
Ash Adams
Although child car seats are usually supposed to be put in the back of a car, Allison drives with Sky up front so she can monitor her daughter's color and breathing. "It's the lesser of two evils," she told Adams.
Ash Adams
Allison changes Sky's ostomy bag.
Ash Adams
Sky has begun taking small steps here and there on her own.
Ash Adams
Sky looks down at her brother, Sage.
Ash Adams
Allison slices Story's birthday cake near Sage, Sky and their grandfather.