Thursday, October 03, 2013

The little school with the BIG heart!

To The Staff and Students and Parents at SWOPS, The Little school with the BIG heart!!!

WOW!!! I don't know how else to describe the feeling of seeing the BEAUTIFUL Baskets and Prizes made up by the fabulous people from SWOPS! We as a family have always bragged about what a great school we have in Bond Head, the warm hearts of staff and students alike have always made our school feel like a second home for our children. When Madi started at school she had already been diagnosed with Cystic Fibrosis, and over the years SWOPS has participated in events to raise money and awareness for this devastating disease. As a family, myself, Glenn, Jessie and of course Madi have always appreciated the support. Never did we ever think we would be in a position that we would require financial support to help extend our daughter’s life and improve the quality of that life, but here we are.

We are thrilled that Madi is one of only 100 people in Canada that will benefit from this amazing drug Kayledco, however at the same time, the daunting price, initially said to be $300,000 and actually $348,000, makes it inaccessible for most. When our community heard that funding had been found to finance 80% of the price, it jumped in with both feet to help raise the balance so that she could get on it. Amazing!! I can’t tell you how very thankful we are. Madi's health has improved significantly, so much so that the actual diagnostic test for CF was negative when tested 1 month after being on the drug! In order to maintain her health she must remain on this drug.

We appreciate so very much all the effort put into making the baskets for the fundraiser in Beeton! That fundraiser raised an amazing $16,000, which is roughly another 2 1/2 months of Kalydeco for Madi!!! The fundraising continues, and a Gala is planned for NOV 23RD, among other events. In the meantime I am determined to work at having the provincial government pick up the tab for this drug as recommended by Health Canada back in Dec. 2012.

Again thank-you so very much for your continued support!!

Beth, Glenn, Jessie and of course Madi!!

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