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Becky’s Story

24 January 2020

Becky's Story

Hi, I’m Becky and thanks for taking the time to have a look at my story.

Just a little about me; I’m a busy Mam of three children, living in Wales along with my husband and the equivalent of a small petting zoo worth of animals.

There are many things I could say about myself, for example, I’m a Taurus, I’m a diamond member of Slimming World where I’ve lost over 8 stone in weight, I don’t eat gluten …. And so-on however, the central part of my story is that I have NF1.

NF1 came into our lives in 2012. My son Zander, who was three at the time, presented with a speech delay and behavioural difficulties. Initially the specialists were looking at the possibility of autism however, following the discovery of small birth marks appearing over his body, Zander was diagnosed with NF1.

It was during this time that I realised that I too had similar birth marks, as did my youngest daughter Indigo, who was nine months old at the time. As a result, it was agreed that we would be tested for NF1 as a family.

The results confirmed that I had NF1, along with Zander and Indigo. My eldest daughter Carys and husband were both clear of the condition.

So, I did what any Mother would do, I panicked. What was NF1? How will it affect us? Will my children be okay? The list went on. I looked up the condition online (Google has all the answers, right?!) but this just worried me more. There were so many facts and figures that I read through, repeatedly, but only one ever stood out to me; There is no cure.

I felt helpless.

I blamed myself. Then I blamed whoever and whatever else I could think of; long past family members who may have passed this condition on to us? That TV fitness man in lycra who told us all to get motivated and lunge everywhere, had I lunged too much? Was it the microwave? The mobile phone radioactive waves? But then I’d come back to blaming myself again. It was a constant battle.

Of course, all of this was an overreaction, one I look back on now and remind myself of how lucky we’ve been as a family since our diagnosis.

Yes, living with NF1 has its ups and downs. For example; Zander, now aged ten, still has his struggles with learning and behavioural issues and in more recent years has been diagnosed with Scoliosis, or ‘his high shoulder’ as he refers to it. Whilst Indigo, now aged 8, has assisted learning support at school to help her with her studies however, at the end of the day they’re still just like any child of their age who doesn’t have NF1; they like playing on their iPads, they fight over Netflix, they know all the words and choreography to Baby Shark (I’m sorry if that song is now stuck in your head …do do do do do do).

Following the endless support and advice from the incredible NF1 specialists and NHS teams, we continue to live a normal family life. Of course, I was always told that ‘Normal’ was a cycle on a washing machine, so yes, day to day living with NF1 can be difficult at times however, it’s something as a family we’ve learned to adapt and grow with together and all agree that it’s what makes our family unique in its own special way.

"day to day living with NF1 can be difficult at times however, it’s something as a family we’ve learned to adapt and grow with together and all agree that it’s what makes our family unique in its own special way. And we are unique. "

– Becky

So here we are, eight years after our diagnosis and an end to my constant worrying (who am I kidding? I still worry but now mostly about average things like; are they eating enough veg? or, will those school shoes last until the end of term?).

I want to give back, I want to help the wonderful charity who have supported us all this time, I want to make a difference.

As I mentioned at the start, I’ve been on my own weight loss journey over the years and, as a result, now feel more confident in myself and abilities to try something new. I wanted to set myself a challenge, something I never thought I’d be able to achieve when I was heavier. As a result, in February last year, I decided to join a local beginners 0-5k running group, to help me complete my first ever Park Run. The first session we started with walking for 1 minute and then running for 30 seconds, which felt like an hour! Over the sessions we gradually increased the running from 30 seconds running to full minutes, eventually not walking at all until we finally reached 5k without stopping. I completed my first Parkrun last April and following this I decided to push myself again by entering both a 10k race and the Cardiff half Marathon, something I never thought would be achievable.

Again, it took time to build up the mileage and endurance required to complete these races. My friends and I would run two to three times a week gradually increasing our distance whilst constantly trying to distract ourselves by talking about anything we could; did you know that you can identify a female duck (or hen) by the colour of its feathers? Or that a kangaroo has three vaginas? Honestly, you learn something new every day. 

And somehow, step by step, I did it. I completed the 10k race and the Cardiff half marathon. I still can’t believe how far I’ve come from those initial 30 seconds of running, to now.

And now, I face the next challenge. The Virgin London Marathon! Thanks to the NF1 charity I successfully gained a place to represent them at the Marathon. I was initially overwhelmed (I still am), then nervous (also, still that too) but actually elated that I get to run for something so close to the heart of my family. I get to show my children that, no matter what problems you may face, you can achieve anything. That, even if you think you can’t do something, you actually can if you work hard enough to get it.

So here I am, working hard to get the miles in to successfully complete (please God!) this, often once in a lifetime, achievement. Week by week, mile by mile, energy gel to energy gel.

To support my entry, I have been actively raising money for the NF1 charity, holding events with the running club such as; quiz nights, curry nights and raffles worthy of the Price is Right game show. The set target of £2000 has almost been reached and I’m overwhelmed with the love and support I’ve received from friends, family and even strangers along the way.

Crossing the finish line won’t just be about me, it’ll be about my children, it’ll be about everyone being diagnosed with NF1 right now who are sat there, as I was, worrying about what the future holds for them. It’ll be about the charity who have endlessly campaigned for a cure and a way of making lives easier for all NF1 sufferers. For this, every mile will be worth it.

"Crossing the finish line won’t just be about me, it’ll be about my children, it’ll be about everyone being diagnosed with NF1 right now who are sat there, as I was, worrying about what the future holds for them. It’ll be about the charity who have endlessly campaigned for a cure and a way of making lives easier for all NF1 sufferers. For this, every mile will be worth it."

– Becky

Thank you for taking the time to read my story. It is my hope that you are not reading this in fear of NF1 or feeling helpless about a diagnosis, please trust me when I say I’ve been there and completely get it but honestly, there is light at the end of the tunnel and often it’s the start of something truly unique or, in my case, 26 miles of running …. Without anyone chasing me or making me do it. Just me and NF1.

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