Hi. My name is Emily Joost. I live in Swansea, Illinois and am now 12 years old. I am in 7th grade with other kids, who like me, have limitations and need special attention. I like my teachers and enjoy going to school each day.
I am the youngest of four children in our family. I have two brothers, a sister and two neices. Matt is the oldest and is married to Emily! (so there are really two Emily Joosts!) They have two daughters Abby and Gianna, so that makes me Aunt Emily to them. My brother Andy is married to Melissa and my sister Katie is married to Sean. So everyone else has moved out of the house and I get Mom & Dad all to myself.
I am generally healthy but I had surgery when I was real little to insert a shunt into my brain and have had to have the shunt replaced multiple times over the years. Like most Aicardi girls, I have seizures (or infantile spasms) most every day. That’s my biggest challenge. They usually come when I am waking up or tired and can last from 5 – 60 minutes. I take medicines to try to control them. Right now that is Vigabatrin (Sabril), Felbatol, and Clonazepam. I may have several seizure free days and then they come back for awhile. It is difficult to find the right mix where the seizures are somewhat controlled but I am also alert and not lethargic. I also have a VNS, which is kind of like a pacemaker that stimulates a nerve in my neck to try to prevent seizures.
I have grown to almost 5 feet tall which makes me just a few inches shorter than Mom. I am working on gaining weight right now so I get to eat all kinds of good, fattening foods. I really like mashed potatoes, sweet potatoes, pot pies and chocolate milk. I can drink through a straw but Mom & Dad feed me the rest of the stuff with a spoon.
I love to roll around and wiggle and do stomach crunches. I have the strongest abs in the family. So I work off a lot of calories. I don’t talk, but I smile a lot, and that makes everyone else smile. Sometimes I just give them half smiles or make goofy faces and then they laugh. My brothers and sister are all fun to play with and I think they are glad they have a younger sister like me. My niece Abby also likes to play with my toys and help take care of me. When I giggle and laugh, everyone comes running and just laughs with me.
I love to be outside and feel the wind on my face. And I love music. Both really get me wiggling. I go everywhere with my Mom & Dad and I love to travel on vacations. We hike in the mountains and I ride in a special jogging stroller that lets me go places others may not be able to get to.
Lots of people know who I am. My dad claims I am the “World Famous Emily Joost” but I’m pretty sure he is just making that up. My family held a fundraiser for 10 years to benefit St. Louis Variety, the charity that helps buy my wheelchairs and some other stuff for me. I used to get on television every year during their telethon so maybe that’s why Dad thinks I am world famous! Lots of people there do know me though, and lots of people at church and around town, so I guess I am at least locally famous.
Some people might see me in my wheelchair and feel sorry for me, but I am very happy and loved by lots of people. There are times that I am so full of joy that it just kind of bursts out and makes other people happy too. I am glad I got a chance to be born into such a good family. Sure I’m a little different, but my brothers and sister are all different too. None of us are the same. We are who we are. And I’m just Emily, one of the kids.