Hi, I’m Tegan, and in a couple of weeks I’m going to be 18.
I was born with a Mitochondrial Disease called Cytochrome c Oxidase Deficiency which is a genetic disease that affects my brain and muscles leaving me feeling really tired at times, especially if my seizures are particularly bad.
People might think that because I don’t speak, and because I am in a wheelchair, I don’t have a great life: I do! I have a great family, and I get so excited when I get to spend time with my sister and my brother. I love going to Riverwalk College to spend time with my friends and do fun stuff that I don’t get to do at home. I have an infectious laugh that people just can’t help joining in with. I love my pets, and I spend a lot of time playing with them when I am at home. I also have some friends who come to help my parents look after me, and I give them a run for their money as I can be a bit cheeky!
When I am feeling tired, it’s really important that I have somewhere comfy to sit, and that’s why I have my positional chair. Unfortunately, this broke during lockdown and they can’t repair it. A new one is going to cost my mum and stepdad nearly £5000 as budget cuts mean my Occupational Therapist is unable to get me one like she did last time.
This is where you come in!
My friend, Georgie, came up with this amazing idea. My 18th – a milestone we never thought I would reach – is on 10th January and to celebrate in style, Georgie has pulled together a group of fellow thespians, dancers, musicians, singers, and a magician, to create a show. I am so excited. It would make my birthday extra special to know that people around the country were also watching this performance along with me.
The link for our show will be available on here on my birthday weekend, but here are the some details for now:
** “An Evening of Joy” will premiere on Youtube at 7:30pm on Sunday 10th January 2021 **
Please help us to spread the word so we can create the best virtual audience and raise as much money as we can!
This is my friend's Youtube Channel where the show will take place: