“I am lucky enough to have a front row seat for Humanitarian Acts,” proclaimed my new friend Ida Huneault who chaired the dental hygiene conference in Ottawa at which I was the keynote speaker.
Her 15 year old son Tyler Huneault has Sialidosis, a very rare enzyme disorder from which few children survive more than a couple of years. This disease has left her sweet, smart and engaging son with a skeletal malformations, multiple bone fractures some requiring surgery, end stage kidney disease, lack of coordination, tremors, and coarse facial features – yet he is handsome! Right now, he is the only child living in North America with this branch of Sialidosis disease! However, there was a boy named Alex from Poughkeepsie NY with Sialidosis who was 20 days younger than Tyler. The families had many visits with each other up until Alex succumbed to the disease at age 6. In the world, at this time, there is only one other known child with infantile onset Sialidosis and that is Mia who is 5 and lives in Germany.
Tyler has been on national TV trying to raise awareness and money. Through a fundraising event, a very young girl named Emily heard of Tyler’s story and wanted to help raise money for research. She had a garage sale too. Her kind act was in turn picked up by a real estate company who featured her story at an inspirational breakfast in Florida….where hundreds of strangers to Tyler donated over $25,000 in cash on the spot towards Sialidosis research.
The garage sales continue yearly and are attended by hundreds raising $25,000 each year. Both Tyler and Emily a make public appearances. To date, Tyler and Emily have raised over $350,000 for McMaster University where they are researching the disease.
When flying to Disney Land on a Make A Wish trip, Ida spotted a celebrity. Through the flight attendant, they sent a note to him about Tyler’s desire to get a photo together. The celebrity waited until the plane emptied, then walked back to their seats for a short conversation and photo op.
I really wanted to meet this young pioneer who inspires so many. When Ida invited me back to her home after the conference to join her family for dinner, I enthusiastically accepted. I sat down near Tyler on the carpet. He was wrapped in a yellow sweater his grandma had knitted and we immediately connected like we had been old friends.
He play-acted a comedy scene with his mom. His dad fed him dinner and patiently waited in between in each mouthful claiming it teaches him the patience he needs for hunting when he is perched quietly up in a tree awaiting the deer or goose.
I had a front row seat for ‘Gratitude,’ witnessing how humor, sweetness, and cherishing family moments far outweighs the challenges of physical limitations.
Eva, thank you for sharing Tyler’s story and shedding light on this devastating disorder. Tyler’s struggles serve to remind me of how precious life is and how joyful it can be in the face of adversity.
Yes, and we need reminders. Life is balanced: With complication and challenge comes learning, beauty, and humanity….if only we can allow ourselves to see and experience it!
Yes, and we need reminders. Life is balanced: With complication and challenge comes learning, beauty, and humanity….if only we can allow ourselves to see and experience it!