Lylee Card spends much of her time in hospital so her sisters Siena, Millie and Evee cherished the opportunity to share a special moment with her at the official turning on of the Bundaberg Region Christmas lights.
The five-year-old was diagnosed with the rare metabolic condition Congenital Disorders of Glycosylation.
Her parents were told she may not survive her first year of life.
That’s why her mother Kayla sees every moment spent with Lylee as a blessing.
Along with father Matthew, the family joined Mayor Jack Dempsey to officially turn on the Christmas lights on December 1.
“It’s just a big honour,” Kayla said.
“We don’t know how long Lylee is going to be here, so it’s something we can do as a family and celebrate.”
Kayla kept the turning on of the lights a secret from her Christmas-loving girls until the day arrived.
“They were very excited,” she said.
Siena and Millie said it was “really special” to turn on the lights and agreed that the dazzling display was spectacular.
“It’s beautiful,” Millie said.
“I think they look amazing,” Siena added.
Mayor Jack Dempsey thanked the Card family for joining Council and turning on the lights on behalf of the entire Bundaberg Region community.
“What a fantastic night to shine a light on the spirit of Christmas,” Mayor Dempsey said.
“It was wonderful to be able to share this with the Card family and is a timely reminder to everyone that the festive season is a special time to spend with friends and family.”
They said they were thrilled that Lylee was well enough to leave hospital and join them for the turning on of the lights.
“I think it’s really cool that they get to do it for her,” Siena said.
When asked what they loved about Christmas, family was high on the list for both girls.
“I like spending time with family and we get to open presents and stuff together,” Siena said.
“I love spending time with my family, Lylee being here for Christmas – because sometimes she’s not here – and I just love spending time with my family,” Millie said.
Kayla said Christmas was the best time of the year and they were blessed to celebrate with Lylee.
“It’s not only a hard year for her, it’s been a hard year for her sisters,” she said.
“It’s just something to bring joy to the family.
“Her condition is very life limiting. Because it’s so rare we don’t know what is going to happen.
“We’re just very grateful she’s here.”
The turning on of the lights marks the official start of the festive season in the Bundaberg Region the launch of Council’s 2021 Christmas program.