Unable to talk with a feeding tube yet blessed with an infectious smile, Aubrey Rose Hollenkamp pointed and jumped up and down. Like her daddy, she, too, wanted a haircut.
“It was one of our last interactions with Aubrey,” said her mom, Nancy Hollenkamp, emergency plans coordinator at Duke Energy who also happens to be a licensed cosmetologist and hair stylist. “I was cutting my husband Jerry’s hair and Aubrey wanted the same treatment. We were getting ready for a Make-A-Wish trip to Disney.”
That wish was never fulfilled. Aubrey died just a few hours later, only two days before her third birthday.
Aubrey was born six weeks premature with two holes in her heart. Doctors later diagnosed her with a rare condition called Scimitar Syndrome – where two of her pulmonary veins traveled to her liver instead of to her lungs. Aubrey endured five major surgeries in all, including heart and double lung transplants. Through it all, there was that smile.
“Aubrey was always smiling and waving to everyone around her,” said Hollenkamp. “It was her loving spirit that motivated Jerry and me to start the Aubrey Rose Foundation.”
When a child has a life-threatening condition, the whole family is sick.
Serving the family unit
The all-volunteer foundation provides financial and emotional support to families caring for children with life-threatening medical conditions.
Headquartered in Cincinnati, Ohio, the foundation started out giving families modest grants of $500. Fifteen years later, the foundation has helped more than 8,000 families with over $1 million in assistance.
“When a child has a life-threatening condition, the whole family is sick,” said Hollenkamp. “So often the siblings are overlooked, but life goes on, and their needs must be addressed. Also, many dads suffer significant stress as they suppress their fears and anxieties.”
Hollenkamp’s main message to families: “Stay positive – you can still have fun even though you have a sick child. It’s so important to stay together as a family.”
Families must apply to the foundation for assistance. Each case is evaluated based on the needs of the family. Once approved, financial aid is provided for the medical requirements of a child who has a life-threatening condition. The foundation also provides gifts for the sick child and other family members so the entire family feels the love.
Some of Hollenkamp’s most rewarding experiences involve working with families in the foundation’s Healing the World’s Hearts program, which funds heart procedures that can save children’s lives and enable them to live healthy and productive lives.
“Two of the families were from the Philippines and Russia,” said Hollenkamp. “They had almost no financial resources. Without the foundation, prospects for the babies were dim.”
Outside of medical assistance, a prime way the foundation touches families of sick children is by hosting holiday parties. “We ask parents what the children need and want,” said Hollenkamp. “We then purchase gifts for all family members, such as stuffed animals, toys, strollers and medically necessary items.”
One dad sent Hollenkamp a note of thanks after his children opened a package packed with oversized stuffed animals. “I’m using a tissue in this box to wipe my tears,” the man wrote. “I can’t believe you thought about my whole family. Not only did you help us financially, you helped our kids, too.”
Simple start made all the difference
Like other nonprofits, donations, grants and fundraisers are the lifeblood of the foundation. When the organization first started, the Hollenkamps held dances and golf outings to draw donations. They eventually added to the lineup a “ladies night out” and an American Girl fashion show.
Funding the Aubrey Rose Foundation
Jerry Hollenkamp and his son Spencer run Writely Sew, a company that embroiders and embellishes a variety of apparel for schools and small businesses, as well as other nonprofit organizations in order to save them precious funds. They charge a fraction of what other embroiderers cost. Customers can choose from 256 colors, which provides many choices when printing on apparel.
The foundation also sells promotional items, which can be customized. When clients purchase from Writely Sew, they know they are helping children in need.
All proceeds go to support the Aubrey Rose Foundation.
“My parents provided the first donations,” said Hollenkamp. “They wanted to help get the foundation off the ground.”
What began with a few dollars is now a highly regarded nonprofit. In a recent competition held by the Cincinnati Business Courier, citizens voted for a favorite charity among many worthy contestants. The Aubrey Rose Foundation, which Duke Energy sponsored, placed second, receiving a $5,000 award.
Aubrey was also an organ donor. To honor her legacy, Hollenkamp advocates for organ donations and sits on the medical advisory board of Life Center Organ Donor Network. The organization promotes and facilitates the donation of human organs and tissues for transplants in the greater Cincinnati region.
Hollenkamp said none of this would have been possible without the support of family, dedicated volunteers and her employer, Duke Energy.
“I basically have two full-time jobs,” said Hollenkamp. “My work with the foundation would not have been possible without the incredible support of my managers, co-workers and leaders at Duke Energy. They’ve allowed me to be flexible in my schedule to accommodate foundation requirements.”
As for the future of the foundation, there’s no end in sight. It’s a family passion.
“Aubrey loved life, and we love her,” Hollenkamp said. “She’s still touching people’s lives.”