banner image

Charlotte’s Story

Celebrating Me!

Hello, my name is Charlotte. I am 24 and live alone with my two chihuahuas in a 2-bedroom bungalow in North Yorkshire and yes, I am living with ataxia telangiectasia but even though I have this, it is not my life.

I live alone due to the fact I lost both my parents but my mum always taught me one thing that I have always lived my life by and I believe has made me who I am. I am feisty, stubborn, independent, resourceful and I am not afraid to say what I think or be who I am but I am also kind, considerate of others and believe it or not, I get scared and shy sometimes too.

If you don’t mind, I would like to share this lesson with you.

My mum always taught me that we are who we are, your condition does not make you, the wheelchair, the medication, the physiotherapists, the doctors, the hospitals none of that makes you. Yes, you may think life will be easier without any of this and you may feel alone sometimes (I know I have) but we need to know we are never alone.

I love reading because it lets me escape reality for a while. I can immerse myself in the world of the book and the characters, imagine what they look like, what they sound like and how they interact. I love music and movies for similar reasons.

We have got to accept this condition we have but no matter what we are told, or how we feel, we need to believe we are strong and we can do this, but we will not let this or anything determine our lives and how we want to live them.

At the end of the day we all know we are ill to a different extent but there is one thing we all want no matter who you are, how old you are, or where you’re from. We all want to be NORMAL. We don’t want special treatment or to be singled out – just think how humiliating and embarrassing that must be for someone.

So if you meet someone different, don’t call them names or be nasty just because you think it looks cool, just remember we are people too and we just want to be treated like any other person our age.



My life in lockdown

Since lockdown or social distancing was put in action I have mainly been working through Netflix series and a few Netflix movies but I have also been helping the A-T Society with a few things, as well as looking after my 2 dogs (my babies) ironically called Baby and Prince who I quite happily look after every day.

The dogs keep me company as the three of us live alone in a bungalow but we do normally see my half-sister Liz on a Saturday, when she takes me to do Parkrun with her, we then go shopping afterwards for any bits I need. I haven’t seen her or been out with her since the 7th March.

I have carers coming in three times a day to help me with whatever I need doing, but since the Coronavirus outbreak they now they have to wear gloves and aprons. I sometimes see my brother but this is now if and when I need his help. He stands a good distance away from me and I am not allowed to see his children (my niece and nephew) which is hard.

My boyfriend used to finish work and come to see me; he’d then spend some of his day off with me but this has also been put on hold due to this lockdown. We do speak nearly every day and we are making plans for a holiday together as well as looking into me moving closer to him once this is all over.

The adults living with A-T have a Facebook Messenger group called “A-T doesn’t define me” which we use to stay in touch with each other, a couple of months ago I had the idea to create an “interaction” post for the group to generate conversation and so we could get to know each other better.

On Netflix I have been watching a series about Ted Bundy which was really interesting, a new series of Vampires, and I am currently working my way through the Vampire Diaries series where most girls like Stefan or Damon but I actually prefer Klaus (go figure!). I have also watched Glee again. As for movies I have watched a few such as Twilight, Fifty Shades Of Grey, What To Expect When You’re Expecting, and P.S. I Love You.

I imagine like all of you I am bored, fed up and frustrated with being stuck inside and not being able to go anywhere or see anyone. I have come to the realisation that life’s too short so if you want something in life then you need to go and get it because no one can do it for you and you will always wonder “what if”. Of course, we’ll have to wait until the self-isolation and social distancing rules are relaxed to be able to go out and do this but we can plan ahead.