*Written with audio files from Rob Dutton and McKim Ecclestone from Swap Talk, airing Tuesday, April 21, 2026.
ELORA – When you listen to Amy Clifford and Paul Kalinowski talk about the courage of their 21-month-old daughter, Lily, who is living with an ultra- rare genetic disease known as CASK, you can’t help but be encouraged by their love and hope for their family’s future, which includes their eldest daughter, 4 year old Charlotte.
CASK is an ultra-rare genetic disorder that affects how the brain grows, develops and functions. Amy explains that for Lily, CASK is a de novo mutation – a random genetic change hat happened by chance before she was born. Teaching others about this rare disease, increasing awareness and support is paramount to these parent’s efforts, all the while ensuring Lily’s sweet personality shines bright for all to see.
On Saturday, May 2, they have organized a community event, “Help Lily Bloom,” a family-friendly fundraiser to be held at the Jefferson Elora Community Centre with a superhero and princess theme. The event will include costumed characters for a meet and greet, arts and crafts, face painting (for a $5 donation), a soft play zone and more. Members of the Elora Firefighter’s Association are bringing a fire truck. There will be a silent auction too. Admission is $25 with all proceeds going to support Lily’s life-changing gene therapy and intensive therapy.
In an interview with Rob Dutton during the Grand 101.1’s weekly community program, Swap Talk on April 21, 2026, Amy and Paul explained their daughter’s diagnosis and the impact it has had on their family.
Statistically, the rarity of a CASK diagnosis is hard to fathom. Lily is one of 500 cases in Canada. Amy explains more about the diagnosis.
The signs of Lily’s illness came early, but the eventual diagnosis was an excruciating wait with much uncertainty of this family, who reside in Elora. Paul and Amy says the signs were evident at 3 months old that Lily was not progressing at the same level as her peers.
When you listen to Amy Clifford and Paul Kalinowski talk about the courage of their 21-month-old daughter, Lily, who is living with an ultra- rare genetic disease known as CASK, you can’t help but be encouraged by their love and hope for their family’s future. Submitted photo
There were long days and countless sleepless nights for the couple, overwhelmed by the unknown. It would be another year and half before the ultra-rare diagnosis of CASK would give them an answer to what their child was facing. As overwhelming as it has been, it also gave them a sense of direction of how to proceed with care. It also opened them up to a global community, which has given them some sense of community in what has been a lonely journey.
Now that they know what they’re dealing with, the family makes frequent trips to various medical centers for different therapies and tests.
Paul explains the schedule at present.
Aside from the emotional toll of ensuring Lily has access to the care she needs, there is the financial stress.
In the United States, charity fundraising efforts are in place, but given the rareness of CASK, there is little in the way of current resources globally for disease that will effect so few . Paul and Amy want to do more to help, not only for their daughter, but for other children and families.
Paul admits that the news of the prognosis they’ve received from some doctors was devastating, but the couple refuses to accept it. They are committed to believing in and working toward a better future for their daughter.
Fundraising has become an important part of their journey to support Lily, and these parents want to focus not only on the illness, but on their beautiful child whose spirit is the epitome of resilience.
With the support of family and friends, a GoFundMe: Help Lily Bloom page has been set up by Amy to help raise funds to support their daughter’s care.
Amy, Paul, Charlotte and Lily hope that the community will join them on May 2 at the Jefferson Elora Community Centre for the Help Lily Bloom event, where they will be able to support an important cause, but also get to meet the family and, of course, Lily.
To learn more about this family’s journey, follow them on Instagram @helplilybloom. To offer your support, donate to GoFundMe: Help Lily Bloom.
