Princess and Superhero Bash to support Elora girl with rare genetic disorder

ELORA – Buoyed by the progress Lily is showing after two sessions of intensive therapy, and heartened by advances in research in CASK, Amy Clifford and Paul Kalinowski are holding a fundraiser where princesses will reign supreme and superheroes will demonstrate their superpowers.

The “Princess and Superhero Bash” is slated for May 2 from 10am to noon at the Jefferson Elora Community Centre.

It will be a family-friendly affair with special appearances by Spiderman and Elsa, as well as face painters, balloon artists, jugglers, kids’ activities courtesy of Hometown Hideout and a crafting station where kids can build their own tiara or a superhero mask.

There will also be a silent auction of items such as a spa day, baskets of toys and activities for kids, a Buffalo Sabres signed hockey stick and so much more.

“There’s been a huge response from businesses,” said Paul. “Local companies have donated things for the silent auction. I think there will be something for everyone.

“And it will be fun for families as well.”

Behind the fun and smiles is concern for their 21-month-old daughter Lily, who was diagnosed in December with an ultra-rare genetic disease known as CASK that causes developmental delays and intellectual disability.

It’s a spectrum-type disease so it displays differently for each person who has it. And it’s so rare there are only 500 known cases globally. Lily is one of just five cases in Canada.

And because it’s so rare, little research has been done and there is no known cure.

The Advertiser wrote about the family before Rare Diseases Day in February as Amy and Paul wanted to draw attention to it and the fact there are supports available.

Since then, Lily has had two month-long intensive therapy sessions, and she can now pull herself to a standing position and take a few steps.

She can point at things and communicate in her own way, although she hasn’t formed any words yet.

“We understand her so much more,” Amy said.

“It’s been a game changer,” Paul added. “Recognition is there and she has a tight relationship with Charlotte (the couple’s older daughter).”

Since February, they have also learned advances have been made in gene therapy research. One line of research is looking at activating the dormant gene that causes CASK. The other is to add proteins into the body to overcome the deficiency that causes CASK.

Both are in very early stages, but if human trials are available in four or five years, that might be early enough to change the trajectory for Lily.

“And that’s the urgency,” Paul said. “If she could get it at 4, or 8 or 12, that would bend her curve upwards. Her trajectory would be better.”

And so the fundraiser will help the family pay for the intensive therapy Lily is now receiving and a portion will go to the research projects, which are happening in the U.S.

Lily is slated for a session of intensive therapy at Virginia Tech in the summer. The university is a world leader in research and intensive therapy for CASK, and Paul and Amy hope this will make a difference for Lily as well.

“We don’t know what her future looks like. That’s why research has become our goal,” Amy said.

They have started a Help Lily Bloom GoFundMe, where they’ve shared Lily’s story and donations are accepted (gofundme.com/f/help-lily-bloom).

Tickets for the Princess and Superhero Bash and Help Lily Bloom merchandise are available at tickettailor.com/events/helplilybloom1/2125753.

If the event in May goes well, Amy and Paul hope to make it an annual event.