Kate’s Kause for Angelman Syndrome
[projekktor src=’https://488b0f6bbd6e1f02d285-a9990803a5649dd3960d912508d8bce9.ssl.cf2.rackcdn.com/2013-0926-AngelmansEN6.mp4′ poster=”]
Breaking down the barriers is a common goal for an Elmira mother and her 4-year old daughter. Over the last few years, it’s clear they have the support of their community as well.
It’s a midday physics class at Bluevale Collegiate in Waterloo. Subject matter that’s second nature to teacher Kelly Meissner, who holds a Masters in Neuroscience from McMaster University.
Beyond her profession, that science background has played a significant role in Kelly’s personal life. Within months of giving birth to her second child Kate, Kelly knew something wasn’t right.
“The thing is Kate’s super cute. She looks great and she was really smiley., so of course the reaction is nothing is going on. Deep down as a mom, you just kind of know.”
Feeding was difficult because of a tongue tie, but as the months continued Kate wasn’t meeting her milestones. By four months she showed serious sleep issues.
“She was awake from 12 am to 7am and then she wouldn’t make up for it during the day. So i had great concerns. What baby doesn’t sleep.”
Kelly and husband Jeremy pushed for a referral. The first visit with a neurologist at the McMaster Children’s Hospital confirmed Kelly’s suspicions. Testing gave them a diagnosis: Angelman’s Syndrome.
“Knowing the answer and knowing that she has Angelman’s Syndrome it’s so much better than not knowing, because we can move forward and we can cope with what we’ve got.”
Angelman’s is a genetic disorder, a deletion on the maternal 15th chromosome. It causes severe cognitive and physical delays, a sleep disorder and serious seizures.
“She’s learning to overcome all these barriers and that’s what’s so amazing, because there are restrictions placed on her by her diagnosis, and she doesn’t care. She just rocks it and tries hard all the time and teaches me something every single day.”
Inclusion has been a priority. To ensure Kate’s interaction with other children, Kelly envisioned an accessible park, and so did the community.
Dubbed Kate’s Kause, Kelly and her supporters raised $300,000 in a year and a half. They’ve built phase one of the project., and will continue to add each year.
The charity is also contributing to a U.S. program doing extensive research into Angelman’s Syndrome.
“So we don’t know what the future’s going to be for Kate. We’re positive. She’s rocking it right now, so as long as she meets her maximum potential and we can help her do that we’re happy.”
