ISHPEMING — ‘Walk in someone else’s genes’ this Sunday at the Upper Peninsula Children’s Museum. The event will help teach about disabilities such as KIF1A which will benefit from the event as will Sadie Scott, who lives with it.
“There’s something really endearing about kids with special needs,” said her mother, Shannon Scott.
Sadie Scott has a rare genetic disorder called KIF1A which causes low muscle tone, fatigue, and much more. Her abilities become progressive but as the disease evolves her abilities will start to become regressive.
“I’ve been told that they can keep progressing until the age of five and then when their seizures start increasing in intensity she may start to lose what she has gained and start to regress; however, we don’t know her so we’re going to keep trying to get what we can and keep pushing her to reach her fullest potential. Her whole world seems to be through feeling and touching and exploring through her hands and she also explores through her mouth too and finding a way for her to understand the world,” mentioned Christi Schmitt, Physical Therapist at Bell Teal Lake.
Her therapist has worked with her for over a year and Sadie still remains happy and persistent even if she doesn’t understand much of the exercises.
“I don’t look down the road that far. I don’t know what is going to be her future in order to predict. So, I’m just going to keep pushing her to reach her fullest potential and hope for the best,” shared Schmitt.
There is much variability with this disorder but studies and statistics are of no help when trying to guess what Sadie’s future may look like.
“I just saw a bunch of things leaving when we got that. I saw this idea of her going to college leaving me, and even this idea of her going to the prom and leaving me. It took awhile to re–gear my thoughts and getting her as far as I possibly can and throwing all the thoughts and energy and any money that we had extra and donations from the community at finding a cure for this disorder,” narrated Scott.
There is a crunch to research this illness but money makes it hard to continue looking for a cure or even more information on KIF1A. This is why the Upper Peninsula Children’s Museum is hosting an event on Sunday, December 3rd, to raise awareness and funds for not just this disorder but others, and for those who live with them.
“I want to make it easy to talk about disability and make it easy for kids to talk about Sadie or other disabilities. I don’t want it to be awkward. I feel like there’s a lot of nerves around it and sometimes kids will ask questions like, ‘Why isn’t she walking?’ and the parents will drag them down the shopping aisle instead of letting them ask the question. I like the idea that for this event if I can make Sadie’s future classmates more comfortable with her or with any kids with special needs and learn a little bit about inclusion, walk in someone else’s shoes so to speak, for when she starts school and things like that,” recalled Scott.
One hundred percent of proceeds from this expert led and sensory stimulating event will go towards the KIF1A research. There will also be live music and food trucks, so it is sure to be a fun and safe place to learn, have fun, and walk in someone else’s genes.
“It’s a great opportunity to talk with your kids about children with other abilities, and teach them empathy and have a lot of fun,” expressed Scott.