CARRYING ON THEIR DAUGHTER’S LEGACY BY HELPING OTHERS

Meet Daily Point of Light Award honorees David and Tammy Dube. Read their story, and nominate an outstanding volunteer or family as a Daily Point of Light.

Tammy and David Dube are turning the tragic loss of their daughter into a beautiful legacy. Their daughter Addison was born with Smith-Lemli-Opitz, a rare genetic syndrome that required countless procedures, surgeries and hospital stays throughout the child’s life. When Addison’s younger brother was born in 2013, the logistics of daily life while Addison received frequent care proved to be enormously challenging. Addison passed away in 2019, just shy of her 11th birthday. David and Tammy established the Babygirl Foundation, creating a legacy of helping others in her honor.

The Babygirl Foundation directly funds the Parents’ Closet at Barbara Bush Children’s Hospital in Portland, Maine, where Addison received exceptional care during her life. When parents or caregivers arrive at the hospital, they receive a “menu” of items to choose from, ranging from toiletries like shampoo and toothpaste to comforts from home like a phone charger or cozy pajamas. The closet is available to family members and caregivers with children staying in BBCH’s Pediatric Intensive Care Unit, Neonatal Intensive Care Unit and Pediatric Emergency Department, and David and Tammy are hopeful to expand their reach to additional venues throughout the region in the future.

Despite the tragedy of losing their daughter, Tammy and David have found tremendous strength in knowing that they created a powerful and specific resource that’s greatly needed. When asked, they point out how great the journey of running the organization has been thus far and that they’re looking forward to creating an even more lasting legacy that will impact more families. Their mission to help others is an important reminder of how powerful volunteering can be.

What inspired you to get started with this initiative?

Tammy: Our daughter Addison was born with a rare genetic syndrome called Smith-Lemli-Opitz, which basically meant she had a lot of health problems. Sometimes, we felt like we were in the hospital more than we were home. After our son was born, the complexities of that became more difficult.

David: We found we had to divide and conquer an awful lot because one of us needed to be at the hospital with Addison, and then we needed to have our attempt at giving our son a normal life.

Tammy: Fast forward a couple of years, things started to really kind of take a downward slope for Addison. She spent a lot more time in the hospital and those days were increasingly longer. There was one stay in particular when my son had the flu. Addison also had the flu, so she had to go straight to the hospital from a doctor’s appointment. My husband didn’t have a charger or clothes, so we met up in the hospital parking garage. It was during that stay that we realized that there needs to be something for parents to help them. Barbara Bush Children’s Hospital does an amazing job with the kids, and we just felt like the parents needed to feel supported.

David: The goal of the parents’ closet was to try to make it easier to get some of those comforts from home that you wouldn’t have otherwise.

Tell us about your volunteer role with Babygirl Foundation.

Tammy: It’s a lot of emails, trying to bring donations over to the hospital and lots of setting up events. Also, trying to find sponsors for bigger events, networking and dropping off supplies at the hospital. We also volunteer on a board for the hospital. We have a lot that we do.

David: Try to spread the word as much as we possibly can. A lot of the daily activity is just trying to communicate, blast things out on social media, get people aware of who we are and what we’re doing, and trying to raise funds or products if people want to donate the actual goods that we would purchase instead of a cash donation. The day-to-day is trying to raise funds in support of supplying the closet or getting supplies directly from folks who donate.

What are your long-term plans or goals for the organization?

Tammy: Right now, our parents’ closet resource supports the pediatric intensive care unit at the Barbara Bush Children’s Hospital, which includes the NICU, their continued care nursery and also the pediatric emergency department. Our goal would be to increase that to the entire pediatric footprint at the hospital. Also, we are talking with one of the clinics for palliative care that played an instrumental role in Addison’s care, in the hopes of reaching out and supporting them as well.

We’d love to expand this to other hospitals in our region.

What’s been the most rewarding part of your work?

Tammy: Hearing from families that we’ve helped. We’ve had a couple of close friends who have been in the hospital with their children who have reached out and seen Addison’s picture on the parents’ closet menu. It’s been very rewarding to hear from people we know who personally reach out and say that because of this, their state was more manageable. It’s just a really good feeling to get involved, pay it forward and know that Addison’s memory lives on in what we’re doing.

David: That’s the biggest thing for me: helping the families and knowing that it’s all in her name. She was pretty unforgettable and I think a lot of people remember her smile and her quirky personality. Keeping that alive and trying to make something positive out of a tragic situation is very rewarding.

What have you learned through your experiences as a volunteer?

David: Despite all the differences of people and cultures and families and all the different situations, we’re all the same in that sometimes you just need help. The stress level brought on by a child going through a medical situation is real, and it’s similar, essentially, for everybody. We’ve learned that there are people out there who are less fortunate than us, there are people out there who are more fortunate than us and that everybody has a similar experience regardless of their situation. Any help that we can provide is good for everybody.

Tell us about future partnerships, programs or events that you are excited about.

Tammy: This year will be the sixth annual Babygirl Foundation fundraiser, an in-person event with live music, food trucks and an awesome mobile art bus for the kiddos. It’s on September 21 at the Kennebunkport Conservation Trust. We have other events that you can stay updated on if you follow us on social media, but we’re still looking for sponsors for our big event in September.

David: I want to underscore the looking for sponsors part, because what we’re talking about and what funds the parents’ closet is not an incredible amount of money. A corporate sponsor, who could do more than the $50 or $100 that we would get from individuals, could go such a long way.

What do you want people to learn from your story?

David: I think the thing that we would like people to understand is that it’s okay to ask for help. We always shied away from that and tried to do it all on our own. We knew that while we were going through something, we were still very fortunate in a lot of ways, so we always hated to ask for help because our mindset was that other people were worse off than we were. It took a lot for us to break down and ask for help. If we could get any message out there, it would be to tell people it is okay to need a change of clothes or a comfort item like a blanket or a journal to document things.

Tammy: Obviously, losing a child is extremely tragic, no matter the circumstances. But something for people to learn is that we’re turning something that’s a sad story into something that’s going to be a beautiful legacy. That’s important. It’s helped us heal.

Do you want to make a difference in your community like David and Tammy? Find local volunteer opportunities.