‘Making lemonade’: fundraiser focused on six-year-old with rare disease

The journey for Henry started when he was about three years old when his parents began to notice he was having some delays in development.

“We finally just got in front of the right person who just noticed a few things with Henry and somebody that had some experience through a previous patient,” Lucas said.

The Lucas family was also eventually referred to the Alvin Buckwold Centre in Saskatoon who specialize in developmental areas of healthcare.

It was at this time last year that Henry got his diagnoses of the genetic disease that is like childhood Alzheimer’s.

“Eventually all of the skills that he has right now will be lost,” Lucas said. “Over the next five to seven years he will lose the ability to speak, and to walk, and eat and feed himself.”

Kids typically don’t make it past their 15th birthday when they have this disease.

The family wanted to give back to Make-A-Wish because Henry was selected as a make a wish kid. Most wishes are currently on hold due to the COVID-19 pandemic.

“He got dealt a tough hand, and the family got dealt a tough hand but we are doing the best we can with it and the foundation helps us do that,” Lucas said.

The lemonade stand will be juice boxes of lemonade to abide by the COVID-19 guidelines set out by public health. There will be hand sanitizer and the amount of people gathered will also be monitored.

There will also be a dunk tank at the event as an additional fundraiser for the Ste. Justine’s Hospital in Montreal which is one of few research groups in the world working on treatment for Henry’s disease.

Burgers, hot dogs, and a bake sale will also go toward those efforts.

Jeff Burton with Auroraman comics will be at the park as well to unveil a new comic that features Henry.

“Jeff is also one of Henry’s teachers so there is that connection as well,” Lucas said.

‘Making Lemonade’ is something that Burton had been working on for while but this event was a bit of a push to complete it.

“It’s sort of a public service announcement type Aurorman story where he is talking about Henry’s condition and explaining it in some kid-friendly terms and helping spread awareness,” Burton said.

Sales from the ‘Making Lemonade’ comic that day will go to the Cure Sanfilippo Foundation who are working on a cure for the condition.

“With the help of sponsors to cover the cost of the comic, I can donate 100 per cent of the sales,” Burton said.

Burton began his Auroraman venture about four years ago and has since published seven full sized comics and 11 mini comics. The ‘Making Lemonade’ mini comic will be number 12.

The Auroraman character is a Humboldt, SK based superhero who is just a regular guy who one night was doing a meteor watch with his students, finds a cosmic powered staff and decides to be the superpower of the prairies.

Auroraman will be on hand at the event for Henry Lucas on Saturday at McNab Regional Park.(Submitted photo/Jeff Burton)

Burton also has the audio adventures of Aurorman podcast which is the comic in audio format including narration and sound effects and this week Burton has combined his comic strips and audio comics on YouTube as well.

Lucas said as a parent finding out the diagnoses was hard to say the least.

“We took in the gutt and then we tried our best to what we could today and what we could that day and that was to find a bit of joy and just enjoy life, even if it is just for one more day,” Lucas said.

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angie.rolheiser@jpbg.ca

On Twitter: @Angie_Rolheiser

by Angie Rolheiser

‘Making lemonade’: fundraiser focused on six-year-old with rare disease

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