As you step through the front door of Kelly Meissner’s Elmira home, you are greeted with the welcoming sounds of laughter and big smiles from her two children, Jamieson, 3 and Kate, 16 months. After a brief hello, Jamieson dashes off and Kate stays in her mom’s arms. Kate is a vibrant, happy girl with a big smile. At first introduction, some may not even notice that she is different. She sits up, rolls over and laughs a lot – all things a 16-month-old should do. But as she gets older, the differences between her and her brother and other kids her age will become more and more obvious.
Kate was recently diagnosed with Angelman Syndrome, a very rare neurogenetic disorder affecting one in 15,000 people, characterized by a severe global developmental delay. People with AS, or “Angels” as they are sometimes called, can have little or no verbal skills, poor gross and fine motor skills, and possible seizure and sleep disorders. However, Angels do have a unique characteristic – they have a happy, pleasant demeanor with a wonderful smile and contagious laughter. This is certainly true of Kate.
When Kate was born, Kelly, who has a masters degree in neuroscience from McMaster University, noticed that her baby girl seemed to be moving her arms and legs sporadically.
“When the nurses helped me change her, I noticed she had a lot of limb movement,” explained Kelly. “The nurses told me she was going to be a mover, but I thought the movement suggested something neurological.”
Then, when Kate was four months old, her routine involved going to sleep at 8 p.m. She would wake at midnight for a feed and then not go back to sleep for four hours. By December, that wakeful stretch was from midnight to 7 a.m.
“I knew something was different,” said Kelly of the confusing time before Kate’s diagnosis. “She certainly wasn’t hitting the milestones like my Jamieson did. She couldn’t sit, crawl, or stand.”
Eventually, she was taken to a specialist who diagnosed her with Angelman Syndrom and after extensive therapy at a Waterloo clinic she can now stand with assistance, roll over all on her own, and she’ll take a few steps when prompted to. But for the Meissners the future is uncertain, and there are still many questions about how severe Kate’s prognosis will be. Typically, children with the disorder will walk between the ages of three and six if they are to walk at all and most need 24-hour care for their entire life.
“It’s been hard for me because I am very much a planner,” said Kelly. “I used to think in big chunks of time and look to the future a lot and now I have been told that I can only look six months in advance because we don’t know what’s going to happen.”
In the meantime, the Meissners are just enjoying the time that they have with Kate and making the best of their situation. They have established an organization, Kate’s Kause, in their daughter’s honour with the goal of raising money to build an accessible playground in Woolwich. Her family and supporters want to create a park where kids of all abilities can play together. These parks are more expensive than typical children’s playgrounds because of the special turf used on the ground.
“It’s a great surface for walkers or wheelchairs or kids with braces,” said Kelly of the intended playground. “There’s a whole gamut of kids out there who could really benefit from this park – not just kids with special needs. It can be used by kids who are just learning to walk or kids who are still crawling; because the surface is so soft, it won’t ruin their little hands and feet.”
The Meissner family considered donating the money from Kate’s Kause to neurological research, but ultimately decided that they wanted to do something for the families who are going through the same experience that they are.
”For Kate, a cure is not going to help unless it comes in the next five years,” explained Kelly.
“Something like a playground really resonated with us because it is something that will help those kids who have already been diagnosed. It’s Kate’s way to leave her legacy.”
To raise money for the playground, the family is planning to hold a silent auction in December, a golf tournament next spring, a walk-a-thon, and a bottle drive among others. The first fundraising project is the sale of Christmas cards specially designed for Kate’s Kause. The sale of the cards will go directly to fund this project and they sell for $30 for packs of 25. You can purchase the cards at www.kateskause.com or by emailing firstname.lastname@example.org.