The little boy who can't eat still dares to dream big video

CHARLOTTE CURD/stuff.co.nz

Meet Dayton Preston, who has never been able to eat, and his loving mother.

Chantelle Luke can still remember the harrowing moment when her four-day-old baby boy turned blue in her arms. 

It was just after she had tried breastfeeding her newborn and she knew something was seriously wrong with her baby.

Are you fighting for a cause?

Share your stories, photos and videos.

Dayton, who is now 10 years old, was born with heart defects that required surgeries just two weeks after he was born, including a procedure to remove an artery that was wrapped around his oesophagus.

During one of his early operations a vocal cord was paralysed and as a result the New Plymouth boy can't eat food and has been fed by a tube his whole life. 

Anything he does eat goes into his lungs, not his stomach, which causes debilitating pneumonia and countless chest infections. 

Dayton Preston is hoping to meet his idol Optimus Prime.
Charlotte Curd/Fairfax NZ

Dayton Preston is hoping to meet his idol Optimus Prime.

Last year he had pneumonia seven times. This year he's already had it twice. 

"His conditions are quite severe and complex. Last year was one of the roughest years of his life," 31-year-old Luke said.

"But it was the toddler years that were the hardest. That's when we lost a lot of family and friends. For the first year everyone was really supportive, but then they started falling off." 

His conditions have been quite isolating and have affected Dayton in ways Luke never even considered. 

"He's never really been invited to kids' birthday parties. 

"At his birthday parties I just make sure there's heaps of games for him to play while the others eat. We used to take him into a separate room whenever people were eating, but he's getting better now. It's still quite awkward though. 

"And we've pretty much avoided restaurants and anything food related. If we ever have to go near one we go through the drive-through and Dayton just gets a toy."

Keeping Dayton away from food hasn't been easy though and Luke has discovered even the most well-meaning people can cause damage.

"Some people just don't understand that he is nil by mouth and family members have tried to feed him and he's ended up in the ward for a week." 

Despite the hardships, Luke said in the past ten years the family had met some amazing people, and going to the Ronald McDonald House felt like going home because of the beautiful people there.

At the moment Luke is putting all of her energy into making sure Dayton can get medical clearance to travel to meet his idol on September 1. 

Luke is on a final fundraising push to get herself, Dayton, his 12-year-old sister Kadeejah and his dad Malcolm Preston to Universal Studios in Hollywood so Dayton can meet Optimus Prime. 

"He absolutely loves Transformers. Since he was a baby we've been buying him a Transformer for every procedure he has had. 

"Next month will be his 66th visit to Starship and we've run out of Transformers to get him. There's just not any more characters left."

Luke said every day the family was reminded life was a prize and they wanted to make Dayton's dream of meeting Optimus Prime a reality.

"At last count we needed $10,208 and we've done all of this fundraising ourselves. This is a last push because there were extra fees we didn't really consider. Things like the $500 bond to be able to take his feeding machine out of New Zealand."

The family also has to take all of Dayton's tubes and specialty feed with them and because of the special supplies they are only allowed to stay in America for a maximum of seven days. 

To help raise money the family are hosting a fundraising disco at 6pm to 8pm on Thursday, July 23 at Chipmunks Playland, New Plymouth. It is open for children aged up to 11 years. Tickets are $10 and can be bought from Sarah Trinder on 0278634248. 

The family also has a Givealittle page that money can be donated to. 

 - Stuff

Comments

Ad Feedback
special offers
Ad Feedback