Paying It Forward

In 10 years of service, Forrest Spence Fund finds ways for families to give back

A volunteer serving meals to Le Bonheur families one recent Wednesday night noticed a mom walk through the line and fill a plate for her daughter, but hands full, take nothing for herself.

The volunteer, Jill Long, walked to the table and placed a plate in front of Mary Cowgill. Mary’s eyes welled with tears. She’d been so worried about her hospitalized 2-month-old, her 4-year-old daughter by her side, and her other two children back home in Savannah, Tenn., a two-hour drive from Memphis.

Mary wasn’t thinking of her own needs; she hadn’t realized how hungry she was until that moment.

“I’m trying not to start bawling,” Mary said. “This means so much.”

Empathy. Understanding. Hope. That’s the motto of the Forrest Spence Fund, which was founded 10 years ago by Le Bonheur parents Brittany and David Spence,  who were moved to action after spending 55 days in Le Bonheur’s Pediatric Intensive Care Unit (PICU) with their son, Forrest, before he died. His memory lives on through more than 20,000 families who have received help from the fund founded in his name. The fund, which provides assistance for the non-medical needs of families with sick children, started with one couple’s desire to help families during one of the most challenging times in their lives. Now, it’s grown into a community of helpers, who give back in unique ways to honor their own experiences and help others.

Empathy

Before Laura Grimes’ 3-month-old son was admitted to Le Bonheur for open heart surgery, Cardiovascular Surgeon Christopher Knott-Craig, MD, told her to sleep with his favorite stuffed puppy lovie and lion stuffed animal. Her son could be comforted by her scent, even though she wouldn’t be able to hold him, as he recovered.

Baby Henry, nicknamed the “Braveheart,” had his heart repaired and spent six days at Le Bonheur. He snuggled with his stuffed animals until his mom could hold him in her arms.

“It was a way to feel close,” said Laura. And as she thought about how to help other families going through similar experiences, the idea to give lion lovies to others was formed.

Through her connection with the Forrest Spence Fund, Laura has given more than 1,000 lion lovies to fellow Le Bonheur families. The Grimes family has also supported Le Bonheur through participation in the hospital’s signature race, the Pumpkin Run, with “Team Braveheart” and fundraised through an event called “A Family Affair.”

“Le Bonheur is a family, and we felt that the doctors and nurses took care of Henry like he was their own son,” said Laura. “We were very much included in his care each day in the hospital. We are so grateful for the care that Henry received while at Le Bonheur that saved his life and we want to give back to the hospital that has given our family so much.”

Understanding

Lily Butterick came into the world weighing only 4 pounds. She was immediately transferred to the Neonatal Intensive Care Unit (NICU) at Le Bonheur. Lily was teeny tiny and had a lot of trouble growing.

“We called her our little puzzle,” said mom, Erin. “We did genetic testing and found some issues but there was nothing to pinpoint what exactly was wrong.”

After five weeks in the NICU, the Buttericks were able to bring Lily home for the first time. Around Lily’s first birthday, Erin’s husband, Ryan, joined Le Bonheur’s Family Partners Council, a group that advises the hospital on how best to partner with families during care. There, he and Erin met Brittany and David Spence. David is a Le Bonheur physician and Brittany serves as a parent mentor in the hospital.

Lily came back to Le Bonheur frequently for care. Lily died after unexpected complications from surgery when she was 3.

“I had known Brittany as a fellow Le Bonheur parent, but when Lily passed away, she became something different for me — a mom who had also lost a child,” said Erin. “She was just wonderful to me. She would drop me little notes and meet me for coffee in the weeks after it happened. I needed to look at somebody who has gone through this and survived. Because you do not feel like you are going to survive that.”

Brittany suggested counseling for Erin and her family, which they went to for a year. And at the end of the year, Erin felt a need to offer help to others. She wondered what she could do to help other families and honor Lily at the same time.

Through the Forrest Spence Fund, the 40-week bags were created. The focus is for families in the NICU because it was such a special place for the Buttericks, a place where Lily was able to beat the odds and thrive.

The 40-week bags are given to Le Bonheur families when their children hit that special milestone and are full of developmental toys. The Le Bonheur Child Life team gave input on toys that would be both fun and therapeutic. A note in Lily’s memory is included with every bag.

“It’s been great to be a part of something so positive, and so personal,” said Erin.

Hope

Brittany Spence walked into Le Bonheur’s NICU, 40-week bags in hand, and dropped in a room to bring a little happy to a mom she’d never met.

Radiating warmth, Brittany introduced herself to Brooke Killburn, who had been at Le Bonheur for 15 weeks with her son, Cooper.

Cooper was born with a rare genetic defect called congenital high airway obstruction syndrome. The defect, called “CHAOS” for short, perfectly summed up the Killburn family’s current situation.

As Brooke checked out the new gifts for her baby boy, Brittany inquired into how everyone was doing.

She wasn’t asking from a medical perspective, but on a personal level. How was the family coping with another child back at home, with dad traveling back and forth between work, with understanding a complicated, rare and complex diagnosis?

Brittany’s level of comfort with Le Bonheur families is instinctive. Her demeanor is natural and genuine. And for moms like Brooke, it means the world to be able to talk with someone who has some level of understanding of what they’re going through.

“We were told Cooper had only a 5 percent chance of survival,” said Brooke. “We’re just so grateful to have made it to this place. It’s still a long road ahead, but we’re doing much better than we ever expected.”

Brittany says that as she looks back over the last 10 years, it’s hard to believe how much the fund has grown.

“It grew out of a need, a need that I didn’t even realize existed until we started,” she said. “It’s been an honor to walk with these families, to love these families. I know that it’s a privilege to have them let me in.”

Since its foundation in 2007, the fund has provided 26,731 forms of assistance for patients and families including rent/utility bills, care bags, new tires, car notes, phone bills and purchases of new cribs, bouncers, meal vouchers and gas cards. The fund has also given Le Bonheur items such as rocking chairs, high chairs, DVD players, game systems, CD players, sound machines and crib mobiles.

When Le Bonheur opened a new facility in 2010, the fund built a sibling playroom on the lobby level. The fund has helped 102 families with counseling at no charge, and has awarded more than $110,000 in grants for families demonstrating large needs outside of the medical care of their loved ones.

And then there are the monthly dinners, which take about 440 volunteers annually to pull off and provide meals for every single family member in the hospital. A new initiative, the comfort cart, was just implemented at Le Bonheur. Volunteers take the cart to every floor and provide families with essential items—travel-sized toiletries such as shampoo, lotion, chapstick and deodorant.

The fund has grown to a staff of five, with Brittany at the helm, dreaming up new ways to help families and facilitate the sense of “giving back” the fund’s mission was founded on.

“As much as the fund has grown over the years, our goal is still the same,” said Brittany. “Helping families will forever be the heartbeat of our mission.”