Brittany McLean’s daughter, Alinah Eugene, was born with an often fatal neurological condition and spent nearly a year in the MassGeneral Hospital for Children (MGHfC). Separated from her husband during that time, Ms. McLean found herself living with barely any income, while caring for a son with autism spectrum disorder. Meanwhile, she worried about “Lulu,” the nickname given to her daughter by an MGHfC nurse.
A volunteer, community fundraising program called No Empty Bedsides came to her rescue in small but remarkable ways. She was given tickets for public transportation and meal cards for the hospital cafeteria. And with gift cards for the hospital gift shop, she was able to purchase oil for her daughter’s hair to keep the back of her head free of bedsores.
“These were little things but such amazing help at a time I was really struggling,” Ms. McLean says. “It meant so much that I was offered these things and didn’t have to ask for anything.”
Financial and Personal Hurdles
Hers is one of more than 40 families assisted by No Empty Bedsides, which was started in 2016 to help MGHfC families with financial and personal hurdles to be at the bedsides of their hospitalized children.
It is the brainchild of Naama Kanarek, PhD, a researcher focusing on childhood cancers. A parent herself, she decided to do something after learning from good friends who had lost a child to cancer that some hospitalized children rarely have visitors.
“It’s heartbreaking that kids who have to deal with so much might also be in the hospital by themselves without their parents,” she says.
Spreading the Message
Dr. Kanarek reached out to the medical director of Pediatric Palliative Care at MGHfC, Patricia J. O’Malley, MD, and program manager Sandra Clancy, PhD. Together, they figured out ways she could help by raising funds. The Palliative Care team provides extra support to families with a child who has a serious, possibly terminal illness. They know their families’ challenges and the best way to assist them.
No Empty Bedsides received a huge boost when Sylvia Haber, a graphic designer and also a mother, decided to dedicate her hours and talent to help these parents stay with their children. Today, Dr. Kanarek, Ms. Haber and their recent colleague, Mara Quinn, work together and have held eight fundraisers, including dinner dances, parents’ nights out and concerts. They’ve also staffed information booths to further spread their message.
Tears of Joy
No Empty Bedsides funds have helped parents with childcare for other siblings and provided lodging assistance to families who live far away. They’ve subsidized transportation cards, gas cards, parking passes and cafeteria meals. The group has purchased personal care items like blankets, soap and lotions for parents staying over in the hospital. They even outfitted a study cubicle at the hospital so that a sibling could be near his hospitalized brother and parents.
“We’ve had families burst into tears when we gave them a parking voucher,” Dr. O’Malley says. “Many are living on the edge all the time. To have a dedicated fund to be able to do this has been wonderful. It allows us to be as imaginative and as caring as we can be in trying to reduce some of the stress.”
The Need for Permanent Funding
She emphasizes the importance of having a parent at a hospitalized child’s bedside. “I think it makes all the difference in their sense of how the world cares for them and how safe they feel,” she says.
“We are incredibly grateful to Naama and Sylvia for their energy and the heart they bring to this effort,” she adds. “They are endlessly conspiring to help us more.”
For now, when funds get low, No Empty Bedsides holds another fundraiser. But the goal, Dr. Kanarek says, is to find a major donor to ensure there’s always funding.
Lulu Defies the Odds
Lulu Eugene, now 6, has defied the odds despite some life-threatening setbacks. The whole family is back together. With a nurse by her side, Lulu happily goes to school. Always beautifully attired, with a new bow in her hair every day, she was recently named best dressed at her kindergarten.
To hear these stories is gratifying to Dr. Kanarek and her fundraising partners at No Empty Bedsides. “Every time I see thank-you emails from the families I’m crying,” she says. “We want to make sure that no child hospitalized at Mass General is alone.”
For more information about community fundraising for Mass General, please visit our BeCause website.