Winter Garden nonprofit decks the hospital halls

Winter Garden’s Rene Porter was shocked when she walked into the hospital room of her friends’ son Greyson Heineke in 2010. 

Rather than the cold, sterile, medical equipment-filled room she was used to seeing each week, the room was transformed into a Christmas wonderland. 

Stockings and garland hung from his hospital bed. There was white fluff meant to look like snow around the room. Lights twinkled on the cabinets. There was a small, blue decorated tree. 

It brought a sense of warmth and a comforting joy as the Heineke family was going through trying times with doctors struggling to determine why Greyson, who wasn’t even 1 year old, was having seizures. 

Little did Porter know, seeing that room’s transformation and the impact it had on the Heineke family would turn into a moment of healing for her and the Heineke family as well as a nonprofit that would impact more than 15,000 families across 15 states. 

Porter, founder of The Greyson Project, is collecting Christmas decorations once again to donate to hospitals to spread holiday cheer to families who won’t be able to be home for the holidays. 

Courtesy photo

Holiday humbug 

Tyson Heineke and his wife, Heather, woke up around 5 a.m. Nov. 16, 2010, in their Dr. Phillips home to hear their baby boy, Greyson, screaming. They didn’t know what was wrong. 

A neighbor, who was a nurse, determined he was having seizures, so Greyson was rushed to Dr. P. Phillips Hospital. Within two hours, he was transported to Orlando Health Arnold Palmer Hospital for Children. 

The Heinekes waited for countless tests and labs to hopefully provide answers.

“We were kind of back and forth between the kind of critical care units at the pediatric hospital not knowing exactly what was going on,” Tyson Heineke said. “We went for about six or seven weeks without a diagnosis.”

Between their family, friends and the hospital’s team, Tyson Heineke said they had an amazing support system and unbelievable medical team. 

“We just really felt loved while we were there,” he said. 

Weeks went by and friends like the Porters visited each week to check in on the Heinekes and provide them anything they needed.

“It was hard to know what to say to really comfort them, but you just show up and be with them and do the best you can,” Porter said. 

Tyson Heineke said one of his cousins living in South Dakota sent them a care package that included Christmas decorations that helped the room feel more warm and cozy with a little bit of color and cheer. 

“It was just special during a super hard time for us,” he said. “It’s amazing to feel the love and feel like people are thinking of us.”

Porter said the Heinekes laughed at her and her husband when their jaws dropped at seeing all the Christmas decorations in the room. 

“We were young parents at the time; we really had never experienced something as tragic and heavy as this in our lives,” Porter said. “So, even learning how to show up for people was hard. We tried to do the right things, but that moment changed us because we experienced and saw that something as small as Christmas decorations can really change a whole space, and it gave them power, normalcy and joy and all of these beautiful things, even in such a scary time.”

After more than 80 days in the hospital, the Heinekes finally had answers. Greyson suffered from mitochondrial gene deletion, which means he wasn’t able to produce enough energy and his body was shutting down. 

On Feb. 1, 2011, 10 days after his first birthday, Greyson died. 

Merry and bright

Fast-forward five years to when the Porters were decorating their home for the holidays. After seeing what the Heineke family went through, the Porters still were grieving over Greyson and wanted to do something about it. 

Photo by Liz Ramos

Porter said she remembered how the Heineke’s family supported them from afar by sending them Christmas decorations, and it sparked the idea to do the same for another family.

They shopped for Christmas decorations and wrapped them in a bag. 

After coordinating with someone at Nemours Children’s Hospital, the family brought the bag of decorations to the hospital.

“The child life department lost their mind over it,” Porter said. “They were like, ‘This is amazing. We love this. How many bags in total will you be bringing?’”

It was two weeks before Christmas. But after hearing there would be at least 11 families staying at Nemours Children’s Hospital during the holidays, the Porters were determined to ensure they all would have their rooms decorated. 

Through word of mouth, community members throughout Winter Garden had dropped off enough decorations at the Porters’ home to fill 71 bags. 

Porter reached out to Tyson and Heather Heineke, who still were living in Orlando, and asked if she could make the donation in honor of Greyson. 

“It was such a positive distraction and gift of paying forward something beautiful that came from Greyson’s short time,” she said. 

That year, Porter founded The Greyson Project, which has since become a nonprofit. 

Tyson Heineke said the nonprofit was the perfect way to honor his son. 

This is The Greyson Project’s 11th year, and since its inception, the nonprofit has delivered more than 15,000 bags to families across the country. 

“We never knew or had any vision of this becoming something that served so many other people,” Porter said. “We thought it was just going to be a small thing that privately would help all of us and in turn, our friends. I think what’s been so surprising after 11 years of serving this mission has been seeing how many different people connect to it.”

Throughout the years, Porter has been able to see photos of people donating decorations to hospitals and families decorating their rooms. She’s heard the impact The Greyson Project has had on thousands of people as people contact her to see how they can bring the initiative to their local hospitals.

Porter said the nonprofit is careful on the item selection for decorations. The volunteers have done research and communicated with hospitals to ensure all decorations will help serve the hospitals rather than break policies or end up being more work for hospital staff. 

“We’ve asked the questions so we actually have hospital-approved check lists for all of our bags, which is now a huge service to our child life staff, our nurses and our doctors that want our families to feel normal and that they have power in their own space and continue these family traditions,” she said. 

Tyson Heineke hopes to never spend another Christmas in a hospital. He knows firsthand how hard hospital staff work to decorate the hospital and make families staying there feel special. Now with The Greyson Project, the Heinekes can see how the bags of decorations impact other families, with many bringing their decorations home with them once they leave the hospital. 

The Heineke family still puts up the blue Christmas tree they decorated in Greyson’s hospital room in their home every year.

“It’s something we will cherish forever,” he said. “It helped us kind of cope with being in the hospital, and it made us feel loved.”