GORHAM, Maine — A couple from Gorham who lost their daughter to a rare syndrome is giving back to other families dealing with a child's unexpected hospitalization.
Tammy and Dave Dube started the Babygirl Foundation to honor their daughter Addison and provide parents with much-needed comforts while they are at their child's bedside. Dave vividly recalls what doctors told him shortly after his daughter Addison was born.
"The exact quote was, 'It's going to be a hard, long road,'" Dave said.
Addison was born with a rare genetic condition, Smith Lemli-Opitz Syndrome, or SLOS. It occurs in about one in 40,000 births. Babies with SLOS have very low levels of cholesterol in their blood, which can affect multiple body systems and cause feeding difficulties and growth issues. There is no cure, and there was no indication of how long Addison would survive.
"When we took her home, and we were under the impression she wouldn't make the car ride home," Tammy explained.
But Addison had an incredible will to live. Despite a feeding tube and being unable to walk or talk, she was able to communicate in her own special way.
"You could tell when she was happy. You could tell when she was enjoying herself but also tell when she was unhappy," Dave added.
With a compromised immune system, even a cold would put the little girl at risk for pneumonia. Those complications landed her at Barbara Bush Children's Hospital, sometimes for weeks at a time. Almost five years after her birth, the couple had a son, Owen, born healthy. Addison passed away in 2019, at the age of 11, but not before the siblings did their handprints for the last time.
After Addison's death, the couple started Parent's Closet. Three of the closets are now located at the Pediatric and Neonatal Intense Care Units at Barbara Bush, and at the Pediatric Emergency Department at Maine Medical Center.
Funded solely by the Dubes' nonprofit, the closets are stocked with items, including donations from friends to strangers, to help parents dealing with an emergency hospital stay for their child.
"We've heard from multiple parents when their child has been airlifted or there is an emergency and they come from work to be with their sick child in their work clothes," Tammy explained.
Parents can choose toiletries, comfortable clothes, and other items from this menu. Nurses bring the items directly to their child's room, providing comfort and self-care for parents who are often dealing with their child's condition. The couple also worked to get phone chargers in every room.
"Even being out of sight for more than 5 minutes to go down the hallway -- you just don't do that. Anything that can be brought to the room for the parents as a service," Dave said of what Parent's Closet offers.
The foundation has been able to help 100 families, but the nonprofit is struggling to keep up with the demand. People can donate through the nonprofit's website, and there is an Amazon wish list as well. The hope is to expand the program to the entire pediatric unit at Barbara Bush to give parents a chance to be better caregivers for the kids who need them the most.
There will be a fundraiser for the Babygirl Foundation at the Maine Mariners Hockey game at Cross Insurance Arena at 3 p.m. on Sunday, April 2. For more information on the fundraiser, click here.