Wellesley council approved donating the rental fee of the St. Clements Community Centre to a fundraiser for cystonosis research and awareness, but the issue, discussed on Tuesday night, did not go without scrutiny.
Appearing at council chambers with her family, 23-year-old Hawkesville resident and cystinosis sufferer Frieda Beilstein delivered a speech that explained the disease, and the intentions of the fundraiser schedule for September 14.
Cystinosis, a rare terminal disease that affects one in 100,000-200,000 newborns, eats away at the major organs of the body, including the kidneys, eyes, and liver.
“While the medications and procedures can be painful, it hurts me the most when I find out there are more children being born with cystinosis,” Beilstein told council.
“I wish I could take their pain and cure them from this disease. I may not be able to save them, but through this fundraiser, I will do everything I can to make a difference.”
The September 14 fundraiser will include speeches from cystinosis sufferers and experts in addition to an auction, dinner, and dance, with all proceeds going to cystinosis and organ donation charities.
“During our fundraiser, we will be educating guests about organ donation as it is connected to cystinosis,” said Beilstein. “I’ve always liked the quote, ‘Don’t take your organs to heaven – heaven knows we need them down here.’ Anyone can be a hero by just signing their organ card.”
She added, “The current transplant list for a kidney is five to seven years. I want to change that.”
During discussion, it was raised that council had already waived fees for an earlier cystinosis fundraiser in 2009, Coun. Paul Hergott questioned if doing so again helps set a questionable precedent.
“How many times are we going to do this for the same cause?” asked Hergott. “We did it once before. I don’t know if we should absorb all these costs for the fundraiser. It’s taxpayers’ dollars that are really doing it.”
“I would agree normally with Paul,” said Coun. Herb Neher, “but if we have no other event on that date, the hall’s going to be empty anyway, so there’s no real loss.”
Neher added, “Sometimes you have to look at each case on its own merits and deal with it on that basis. By doing this, you don’t necessarily set a precedent, but you make an exception, and you look at each case as it’s presented.”
“I think I’d be a little more concerned if it was every year, but I understand what Paul is saying,” said Coun. Shelley Wagner.
Council eventually voted in favour of donating the $432.94 (plus HST) rental fee to cystinosis awareness research efforts and organ donation awareness, with Hergott voting against.
