Our speakers today were introduced by Elizabeth Cohoe. Todd Colborne of the Kingston Club joined Rotary 22 years ago and immediately joined the Easter Seals Committee. He has been involved in Easter Seals since that time. Special guests were an Easter Seals mother and daughter, Nicole and three year old Jessica Lessiter.
Todd began with a slide presentation. We learned that Easter Seals was founded in 1922 by a group of Rotary Clubs in southern Ontario, and has now spread to all provinces. Money raised stays in the region where it was donated, based on postal codes. Easter Seals serves kids with physical disabilities. Easter Seals is approaching its 100-year celebration, and to celebrate, the Kingston Club is creating a campfire area for camp Merrywood for the centenary.
Todd outlined the structure of Easter Seals and talked about the two camps in Ontario. Children served are under the age of 19, are permanent residents of Ontario, with a permanent disability that requires a assistive device. There are also post secondary scholarships available through Easter Seals. Families apply mostly because raising a child with a physical disability is very costly. The equipment is not only expensive, but also needs to be replaced as children grow. They may need multiple devices and this can cost up to $40,000 a year. Todd showed examples of how much these items can cost. It was also interesting to hear about Camp Merrywood, as the activities that are available are pretty typical of any children’s camp. This camp costs about $2,500 for a 10-day session.
The kick off for this year’s campaign will be on Feb 20th 5-7 pm at Kingsbridge Retirement Centre. There will be TV segments over the next month. Team fundraising will take place as it has in past. Your business can support the effort with an ad. CKWS donates the cost of these adsto Easter Seals. Todd suggested that Rotary Clubs could do an ad, and there are sponsorship opportunities also available. There are also other local events throughout the year. This year’s pancake breakfast at Smitty’s is one of them.
(Todd will send a link to a great video which will be circulated to all members.)
Todd is assisting Jim Rymerson to set up our club team. Jim is team captain this year, thanks to him for volunteering! We can donate on the page he is setting up online, and we can also donate offline by cheque or credit card. Forms are available at club meetings.
Nicole Lessiter talked about her and her husband’s experience being parents to Jessica who is three years old. Jessica was born with a very rare neurological condition called Pitt Hopkins Syndrome. It affects every muscle in her body. Symptoms include developmental delay, breathing apneas, seizures and reflux. At the age of three she is unable to walk, and some with this condition never do. She will be forever non-verbal, but it is possible for her to have a good life. They knew early that there was a problem but they had to wait for testing. They have been involved with Easter Seals since 2018. Having no benefits through employment, Easter Seals may be the only way to afford what Jessica needs. As funds are not unlimited though, they were advised in 2018 that money available had run out by August. In 2019 the funds ran out in July. Nicole talked about some of the special devices needed for Jessica and they are very expensive. For example, an appropriate walker would be $2,500. Her wheel chair was almost $6,000., and she will outgrow it. Parents try to find the money and only use Easter Seals as a last resort. Easter Seals gives parents $400 a year for diapers. The government doesn’t assist. Other needs include car seats, bed stairs and lifts. Parents try to conserve and share equipment as their children out grow things. That’s how they got their first $10,000., stroller. During Jessica’s first year, the cost for equipment, meds, and special food was $50,000. They have downsized their home twice in order to help make Jessica’s care affordable. The reason Nicole presented this information about cost was to emphasize that donations are really important.
The link for Easter Seals Eastern Ontario is http://www.easterseals.org/contact-us/ontario-east-region/
Krista Leclair of the Kingston Club is the Senior Development Officer for the Kingston Area
The link to Camp Merrywood is https://www.eastersealscamps.org/about/camp-merrywood
Heather Nogrady thanked Todd and Nicole and presented our traditional loaf of bread to Nicole.