I’m going to try and go down the private route for treatment until it becomes available on the NHS. It is a long read but for people to understand, I have to put all the details in.

If you know me, you’ll know how difficult it is for me to put myself out there like this. I hate the thought of putting my health and my situation out there for everyone to see. But I’ve reached a point where I have to try everything I possibly can.

If you don’t know my story, I have a genetic condition called Friedrichs Ataxia (FA). It’s a progressive condition that ultimately affects every part of your body except your brain. Both of my brothers had it too, and I lost them both to it. Chris died in 2016 at 29 and Dan was 19 which was in 2009.

Back when Chris and Dan were diagnosed, even less professionals had heard of it then than they have now. My mum wasn’t really given much information on it and was actually wrongly told at the time there was pretty much no chance me or my sister would have it. They said that it was more common in boys and only 1 out of her 4 children had the chance of having it, so the fact 2 did basically ruled us out.

When Chris died in 2016 out of probably absolute grief I started reading up on the condition.At this point I had absolutely no symptoms, but the more I researched it I realised actually it is nothing to do with your gender. And also the statists of my mums children developing it were miscommunicated. Regardless of the gender, or how many children my mum had each, baby had a 25% chance of developing it as both parents carried the gene. All 4 of us had the same chance. Chris, Dan, and me all fell into that 25% chance and got the condition.

My sister thankfully didn’t. I decided to get genetically tested and I honestly didn’t think I’d have it. I did, and it came back positive.

For years, hardly anyone knew. I kept it to myself. I didn’t really think about it and i carried on with life. I did start noticing things as time went on, I was always in the gym and I’d notice there were certain exercises I just couldn’t really do anymore. I noticed I’d started holding on when on the treadmill. There was always just new little things I’d notice about myself over time.

But this year, things have started getting worse, and the reality of what this condition could mean for my future has become impossible to ignore.

I’m one of the luckier ones in the sense that my symptoms started later than they do for many people. But this is a progressive condition. It starts with things like clumsiness and poor balance, and over time it can affect your ability to walk, your independence and eventually your heart.

The average life expectancy is only into the mid-30s. I’m about to turn 33.

I’m just a mum with 3 children. I don’t want anything special. I just want to be here. I want to watch them grow up and I want to be able to take them places, make memories with them and just be with them.

I do everything I can to keep myself as well as possible. I work, I try to carry on as normal and I refuse to let this condition completely take over my life.

There is a medication that could help slow the progression of my condition. The medication is already being used in America and in countries across Europe. The UK have approved it, but it isn’t available through the NHS.

The private cost is around £250,000 per year

Obviously, that is completely impossible for an ordinary family to fund. The petition is to get this medication made available on the NHS. We’re still trying to reach 100,000 so it can be debated in Parliament. But while I’m fighting that battle, I’m also having to face the reality that I cannot just sit and wait and hope that something changes.I need to try to access this medication somehow.

So, as difficult as it is for me to ask this, I’ve set up this page to try and raise enough money to pay for the medication privately.

I know the amount is huge. I know I’m asking for something that probably feels impossible. But I have to try. Even if we don’t get anywhere near the full amount, every single penny raised could help me get access to treatment until it is hopefully available through the NHS.

I’ve never wanted people to feel sorry for me, and I still don’t. I’ve carried this for 10 years without people knowing, I just want a chance.

A chance to slow this condition down. A chance to stay as healthy and independent as I can. A chance to have more time with my kids. It’s been hard to put this out but I would also regret it if I didn’t just try.

Thank you for reading this, (it was long I know)and for sharing it, donating if you can, and for supporting me