Island family raises awareness about tube feeding through photos with Santa
Brittany Spencer | CBC News | Posted: December 30, 2018 10:52 PM | Last Updated: December 30, 2018
'This is now part of him and so it's a very special thing for me'
A family from Lennox Island, P.E.I., has a put a unique spin on photos with Santa this year, creating a memory to cherish forever.
Madlene Sark said her life was forever changed when her son, Gerry, was diagnosed with a rare metabolic disorder two years ago.
The last two years have been filled with more than a dozen hospital visits and regular checkups with teams of doctors to monitor Gerry's health.
Sark said Gerry requires a feeding tube due to his condition. She said it sometimes makes it hard for him to participate in holiday traditions.
"He doesn't get to have that Christmas meal with all of his family like I do. And I take pride in cooking for my family and I can't share that love with my son in that way," Sark said.
So, she decided she wanted to do something extra special for Gerry this year.
She said she was scrolling through Facebook when she saw a photo of a child sitting with Santa and being fed through a feeding tube. After she commented on the post, a family friend surprised her by organizing a similar photo shoot for Gerry.
She said she cried when she saw the photo.
"I was so excited, you don't even know. That was perfect. That was the best gift the I could have."
'The specialness behind the photo'
Kelly Butler is the photographer who offered to take the photos. She said when she was asked to get involved she jumped at the opportunity.
"I think that will be something they will remember forever and it was super special because it was intimate," Bulter said. "That's really what it's all about, seeing the specialness behind the photo."
Gerry's face was lit up during the entire photo shoot, Sark said.
"The photographer was amazing. She was just so comfortable with Gerry and I find that's a really hard thing for people to be comfortable around him," she said.
"Often times if people see the tubes they just are a little nervous of it, they just don't know."
Hopes to raise awareness
Sark said she now plans to share the photos on social media to raise awareness about tube feeding.
"I think it's important that people realize that even though it may look scary, or it may look different, this is something that's helping children live and still be able to have lives with their families," she said.
She said she knows how quickly kindness can spread using social media. Earlier this month she used Facebook to compile 365 notes of kindness for a friend in need and said, after receiving Gerry's photo with Santa, she believes that gesture has been returned tenfold.
She said she hopes the photos provide some support to other parents and children who have feeding tubes and inspires people to celebrate them as being an important part of who they are.
"This is now part of him and so it's a very special thing for me," she said.
Along with the photo shoot, Gerry also received another special gift from his godmother Kayla Sark — a hand-made teddy bear named Bruce. It has its very own set of feeding tubes, just like Gerry has.
"I wanted him to have something as special as he is," Kayla Sark said. "I passed it to him and he hugged the bear like he knew, he loved the feeling of it. It was very emotional.
"I felt like he really appreciated it because it's a teddy bear that's like him," she added.