Helpline 07939 046 030
Freephone 0300 102 17 22*

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.

Filter News

Filter by Date
Category
Reset

We know 26, 500 people who need your help

To expand our Specialist Neurofibromatosis Network, we need to continue raising awareness of what we do

Read More

The New National Helpline

The National Helpline is expanding to Monday, Wednesday and Friday, from early October

Read More

London Marathon 2022

Congratulations to our 2022 London Marathon runners - thank you from the NTUK team

Read More

Hannah’s NF1 story

9 year old Hannah is running the Junior Great North Run, so other children with NF can also have access to doctors & nurses

Read More

Great North Run 2022

Great North Run 2023 - check out some of our runners' photos

Read More

Sam’s Marathon

Sam, our Specialist NF Nurse for Merseyside & the North West, is running the London Marathon - her very first Marathon!

Read More

NF Patients Community Day

The NF Patients Community Day is on Sunday 9th October 2022 - register to attend virtually

Read More

Appearance, Identity & Law workshop

Appearance, identity & law workshop at Queen Mary University London School of Law

Read More

Alfred the Pirate

Seven year old Alfred the Pirate takes NF1 in his stride, and is supported by Specialist NF Nurse Mel

Read More

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK