Rare Disease Day, which takes place annually on the last day of February, helps to raise awareness about rare diseases and their impact on parents' lives.
Tillsonburg's Mike Gouin has been doing his part. For the past four years Gouin has been raising funds for children with Batten disease in Kitchener, St. Thomas and London.
This year he wanted to bring it home.
Gouin is planning a special Blow Bubbles for Rare Disease Day in Tillsonburg on Sunday, Feb. 28 at the Goodwill Community Store. He will also release a limited number of teal/blue balloons – the colour for Batten disease – on that day, inspired by a balloon release at a funeral last year. Thirteen of the balloons will represent children who have passed away from the disease, one will represent all people who suffer from Batten disease, including friends and family, and one balloon represents the 7,000 known rare diseases worldwide.
"The bubble blowing will be nice," said Gouin, noting the effect cold weather has on bubbles.
Donations on Feb. 28th will be gratefully accepted. Gouin, who will be supplying both balloons and bubble-blowing tools, will have a Harley Davidson oil barrel on hand, which he hopes will be filled with spare change to be donated for Batten disease research (Battten Disease Support and Research Association - BDSRA). He is also accepting donations to help support the family of Mei, a 7-year-old girl in London.
Following the bubble blowing and balloon release around 1:30-2 p.m., Gouin will be holding giveaways at 2:30 p.m. for various items donated by local businesses.
"I'll have a booth set up at Goodwill all day," said Gouin.
A rare, inherited disorder of the nervous system, Batten disease has no known treatment or cure. Those affected suffer progressive neurological impairment, seizures, blindness, loss of motor skills, speech, and is terminal. According to the Centers for Disease Control, 2-4 births per 100,000 in the US are affected by Batten disease.
"Batten disease is most common in the United States," said Gouin, speaking at Town Council Monday night. "But it's also common in Finland and Sweden. In Canada, it is common in Newfoundland. While these children don't live in Newfoundland, most of their parents came from Newfoundland. I'm not sure why that is. Basically that's where it originated from in Canada."
Gouin is inviting the community to join him at Goodwill at 79 Simcoe Street on the 28th of February 'in making the voice of rare disease heard.'
"I'm hoping the people of Tillsonburg will come to this event," said Gouin. "and help us doing bubbles and help us release balloons."