I thought I was just clumsy but it turned out to be a terminal illness

For as long as I can remember, I’ve been clumsy and forgetful.

At primary school I was constantly coming home with bruises from walking into doors, tripping over steps and bumping into tables. As a teenager it just got worse.

In my twenties I would often put the dinner in the oven and forget about it until the smell of burning filled the house. Once I fell down the stairs, hitting my head so badly that paramedics had to glue the wound shut.

Then, nine years ago, I met my now-husband Jon. He quickly got used to me bursting our tyres every time I clipped the kerb while driving and wrenching his arm as I tripped over.

I would laugh it off but Jon would get annoyed at times. I remember the week in which I managed to throw hot tea over him, not once but a few times. He would say, ‘What did you do that for?’

Thankfully, it didn’t put him off because we went on to have a daughter together and were married a few years later. I already had my two sons from a previous relationship and our family felt complete.

When I lost my engagement ring just months after the proposal no one was surprised. 

I laughed off incidents like these and thought that I was just accident-prone, but as the years went by it got worse. I would lose my phone, keys, purse, bank card… the list was endless.

Our finances became so bad that a bailiff once turned up to collect an unpaid debt I’d totally forgotten about.

I would also constantly break my mobile by dropping it and, in the space of one week, I crashed the car into our garden fence twice. Yet I still didn’t go and see a doctor about it – I assumed it was just how I was.

I didn’t even get too annoyed or frustrated either, somehow I always managed to find the funny side.

Then four years ago, a family member was diagnosed with Huntington’s disease. I knew absolutely nothing about the condition so I Googled it.

Huntington’s is a hereditary condition that stops parts of the brain working properly and gets progressively worse over time. As I read the symptoms, I was shocked to realise I had all of them: co-ordination problems, fidgeting, depression, irritability, trouble thinking through things, lack of empathy… Suddenly it all fell into place.

Reading the prognosis, it said life expectancy was around 15-20 years from the onset of symptoms. All I could think about was my children. What if I had it?

It took me a year before I saw my GP and was referred for a genetic test, even though I was sure I probably was suffering from Huntington’s. I was the busy with the children and just getting in with life.

When the neurologist confirmed I had it, it simply backed up my suspicions. In a weird way, I actually felt relieved to know what was wrong with me.

Because Huntington’s causes dementia, I was told that my brain was comparable to a 70-year-old’s even though I was only 31 at the time. And as I’d been clumsy since childhood, I’d probably had Juvenile Huntington’s Disease, which they told me meant I would only have about five years left to live.

Despite receiving such shocking news, I never broke down in tears. The diagnosis made me prioritise what was important and spending time with my children became all that mattered to me.

Part of the condition means that I struggle to feel emotions as strongly as everyone else, and I can lack empathy. I think this has helped me stay positive, and the only time I’ve really had a wobble was when we had to tell the children that I wasn’t very well.

We’ve tried to be as honest with them as possible, explaining why Mummy might not always have energy to do things or sometimes needed to sleep all day.

The year I was diagnosed we took them on a five-day holiday to Antalya in Turkey and, as we all splashed around in the pool together, I soaked up every happy moment.

After that I was determined to create many more happy memories for the children, so I began a bucket list of things I wanted to do with them, including holidays, days out and a once-in-a-lifetime trip to Disney World.

We couldn’t afford to go away last summer, but we’ve booked a trip to Turkey for September and I’m trying to raise money to treat the children to some nice experiences once we’re there.

Now, I’m 33 years old and the doctors don’t know exactly long I’ve got left.

I’m on lots of medication to stop the symptoms, as well as antidepressants and sleeping pills, but nothing can slow down the disease.

I’m also fed through a tube because I can’t eat without choking, I have carers who come round twice a day to help with my dementia and need to use lots of smart technology around the home to help me.

Jon’s set it all up so that I can use my voice to activate the phone if there’s a problem or I have a fall and I can also turn on the lights and things around the house with commands.

He’s sorted sensors that detect if I don’t move for a certain period of time and ones that tell me if I’ve forgotten to shut the fridge door, which I do all the time.

I can get up and down the stairs to my bed, but I’m very unsteady and I need a wheelchair when we go out because I can’t walk more than about five steps without feeling exhausted. 

While I’m able to do things like pull on my socks and pants myself when I’m sitting on the bed, fiddly things like doing up buttons or zips needs the help of my carer or Jon because I don’t have the coordination.

And I’ve stopped cooking now because I was burning things so often and I couldn’t remember recipes or work out the quantities of the ingredients like I used to, so Jon does all of that.

I have good and bad days. Sometimes I go out of the room and forget I’ve even got kids, but my love for them is stronger than ever. And all I want is to give them enough happy memories to last a lifetime.

As told to Rachel Tompkins 

You can donate to the fundraiser for Charlotte’s family’s holiday here

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