Tumour Support Scotland

04/06/2026

Tumour Support Scotland is preparing to launch a new project – Parent Connect.

This service will offer support via phone, text, or email to parents of children with NF.

Whether your child has been recently diagnosed and you’re finding it overwhelming, you’re facing specific challenges, or you simply need a friendly, understanding voice at the end of the line—Parent Connect is here for you.

Living with NF can be difficult and, at times, isolating. Family and friends often want to help but may not fully understand what the condition involves.

Speaking with someone who already understands, who doesn’t need an explanation, and who has walked a similar path can make a real difference.

Sometimes, that connection can be a lifeline.

Look out for the launch of this great new project coming soon.

31/05/2026

Today brings Neurofibromatosis Awareness Month to an end. Thank you to everyone who took time to read our stories and comment. Today we are sharing Kris's story.


KRIS'S STORY

On 9th January 1986 Kristoff David Wilson Ferguson finally arrived in the world — looking like he’d gone three rounds with Mike Tyson. From the very beginning, nothing about Kris’s life was simple.

At just one week old, he began projectile vomiting. No one could explain why. Test after test brought no answers, we were finally told the words no parent should ever hear: “I’m sorry, there’s nothing more we can do for your baby.” The fear and helplessness of that moment are impossible to describe.

Thankfully, that wasn’t the end of the story.

Doctors eventually discovered the cause, and Kris underwent his first operation. The violent vomiting had caused a double hernia, leading to a second surgery. A hiatus hernia followed, though thankfully without the need for surgery. Then came chronic sinusitis, a suspected bowel tumour more and at the age of five, Kris underwent his third operation.

Asthma followed soon after, and it was at this point that we first heard a word that would change our lives forever: Neurofibromatosis.

This was 1990. At that time, Kris’s diagnosis appeared to combine what we would later understand as NF1 and NF2.

We suddenly found ourselves in a very dark place. My beautiful bright, kind and loving boy — had been given what felt, back then, like a death sentence.

Eventually, a referral to genetics brought some clarity. The conditions were separated, and slowly, cautiously, I began to breathe again.

The Sick Kids in Glasgow became our second home.

Later that same year, Kris became a big brother. He absolutely adored his baby brother, and that helped him more than I can say. Life isn’t easy for siblings of children with long-term conditions; they often make sacrifices far too young, without fully understanding why. But the bond between them mattered.

When Kris started school, another challenge emerged. Neurofibromatosis brought unexpected learning difficulties, something almost no one had heard of. At times it felt as though teachers thought I had invented the condition. But through it all, Kris kept smiling. He never complained. Hospital appointments became part of everyday life, surgeries slotted into school terms, and somehow, together, we made it through.

Secondary school was slightly easier thanks to a learning support base and one exceptional teacher who understood the children. He listened — something not all parents experience — and for that, I was endlessly grateful.

College came next, and with it new struggles. Support wasn’t as strong, and it was a tough road, but Kris persevered. He left with his qualifications and a huge sense of relief, having once again proved his resilience.

Throughout his life there were countless operations, long recovery periods, pain, crutches, wheelchairs — and still, Kris never complained.

From the time he was tiny his passion was cars. He couldn’t wait to pass his driving test at 17 and get his first car. So when he announced he wanted to drive a bus, no one was surprised — just a little nervous. After all, buses are big! But he did it!!! He drove buses, then coaches for several years, living out that lifelong passion.

Then came the greatest gift of all, his daughter, Ruby.

There was, of course, the fear that Neurofibromatosis might have been passed on, but she does not have it. Ruby is the light of our lives, especially her daddy’s.

Their bond is something truly special.

After Ruby was born, Kris chose to change career and became a home carer. He loves his job. The people he supports think he is incredible — something I’ve known all along.

Kris’s life hasn’t been easy. But it has been extraordinary. His strength, kindness, resilience, and quiet courage inspire everyone who knows him. And through everything, he has remained exactly who he always was — my amazing boy.

Call now to connect with business.

30/05/2026

JILL’S STORY

When our son was just 18 months old, our world changed in a way we never could have imagined. Until that moment, we had never even heard the words Neurofibromatosis Type 1. Then, almost overnight, it became part of our everyday life.

We were suddenly plunged into an unfamiliar world filled with hospital corridors, medical jargon, endless appointments, scans, and an overwhelming sense of uncertainty. Fear became a quiet but constant companion. Like so many families in similar situations, we found ourselves searching for answers while trying to hold onto hope.

There were moments that tested us beyond anything we had known before. One of the most frightening was the discovery of an optic glioma when our son was still very young. Years later, another brain mass emerged—one that still requires careful monitoring. Each development brought its own wave of anxiety, reminding us just how fragile things can feel.

But the challenges haven’t only been medical. Behind the appointments and diagnoses lies a quieter struggle—the emotional weight that families often carry in silence. The worry, the exhaustion, the need to stay strong even when you feel anything but.

What has carried us through all of this is something incredibly simple, yet profoundly powerful: support. Kindness. Understanding. The ability to talk to someone who truly gets it. In our hardest moments, just having someone listen—without judgement, without needing to explain—made all the difference.

That’s why peer support and charities are so vital. They bring light into what can feel like a very dark and isolating place. They remind you that you’re not alone, even on the hardest days.

Today, our son is 27. While NF1 has undoubtedly shaped parts of our family’s journey, it has never defined who he is. We are incredibly proud of the young man he has become — of the strength and determination he has shown, and of the career he has worked so hard to build and genuinely loves. Watching him continue to move forward in life, despite the uncertainty and challenges NF1 has brought, has been one of our greatest joys.

Along the way, this journey has also revealed something extraordinary: strength we didn’t know we had, resilience we learned together, and the importance of community.

If sharing our story helps even one parent feel less frightened, less isolated, or more understood, then every word is worthwhile.

25/05/2026

Kayden’s Story

Kayden is the only person in our family living with Neurofibromatosis Type 1 (NF1), and the uncertainty that comes with the condition is one of the hardest parts.

NF1 is still not widely understood, so every GP appointment feels like starting from scratch. We constantly find ourselves explaining the condition, advocating for Kayden, and pushing to make sure he gets the care he needs.

One of Kayden’s biggest challenges has been a large plexiform neurofibroma under his arm, which began to grow very quickly. We took him to our GP, who was supportive and acted fast, phoning the children’s hospital for advice. When we were told Kayden needed an urgent oncology review, our world stopped. That single sentence broke us.

What followed was overwhelming: his first oncology appointment, MRIs, biopsies, further scans, and then the decision that Kayden would start selumetinib – a relatively new treatment for plexiform neurofibromas. .

Signing the consent form was incredibly emotional. We questioned everything. Were we making the right decision for Kayden? How would he cope with the side effects listed? How would he manage regular trips to oncology day care, with blood tests every four weeks?

Now, one year into treatment, Kayden has already shown so much strength. He still has at least another year of selumetinib ahead of him, but he faces it with courage every day.

Throughout all of this, Kayden’s big brother has been on the journey too. He has had to adapt to constant hospital appointments, witness his brother dealing with difficult side effects, and carry worries no child should have to bear. NF1 doesn’t just affect Kayden – it affects our whole family.

Because NF1 is so unpredictable, we can never let it sit quietly in the background. It is always there, at the forefront of our minds. But through the fear and uncertainty, Kayden continues to show us bravery, resilience, and just how strong a little boy can be.

22/05/2026

Good luck to everyone this weekend taking part in the Edinburgh Marathon Festival

21/05/2026

OUR NEUROFIBROMATOSIS STORY

A Story of Missed Chances, Parental Instinct, and Fighting for Our child.

When your child is diagnosed with Neurofibromatosis type 1 (NF1), your world changes in ways you never expect. Suddenly every appointment, every symptom, every instinct matters — and you learn very quickly that as a parent, you sometimes have to be louder than you ever wanted to be.

Our journey with NF1 began years before we knew what it was.
In 2010, my partner Christopher (Chris), who was serving in the Royal Air Force at the time, was assaulted on a night out and sustained a head injury. During routine scans in hospital, doctors unexpectedly discovered three brain tumours — pilocytic astrocytomas. A VP shunt was inserted, and Chris was told this was now something he would live with. Later, after being medically discharged from the RAF and moving into NHS Greater Glasgow care, we were told the shunt should never have been placed — but by then his body had adapted and it could not be removed.
At the time, no one mentioned NF1.

Years later, in 2014, Chris and I met while studying adult nursing at the University of Dundee. When our relationship became serious, he explained his medical history — the tumours, the shunt — and that was that. Like many families, we didn’t yet realise there was a bigger picture.

In 2017, everything changed.

One morning, my eldest daughter found Chris unresponsive in bed. He was rushed by blue light to Ninewells Hospital, where we learned his VP shunt had completely blocked. Emergency surgery saved his life, but this was followed by further blockages and repeated neurosurgical care.

During this time, I began to notice physical signs — large café au lait patches, freckling in his groin and armpits — and as a parent who had already faced health challenges with two other children, something didn’t feel right.

I asked a neurosurgeon whether Chris could have NF1.
I was dismissed. I was told it wasn’t genetic. I was told not to worry.
We wanted a child together, and I needed reassurance. I didn’t get it.

Months later, we learned we were expecting our daughter, Anaya. She was born in January 2019 — perfect, we thought. But by six weeks old, I noticed multiple café au lait marks covering her tiny back. Because of what I’d already seen in her dad, alarm bells rang immediately.

This time, I didn’t wait.

Within weeks, both Anaya and Chris were seen by genetics at Victoria Hospital in Kirkcaldy. Based on appearance alone, they were informally diagnosed with NF1. Blood tests later confirmed it — both carried the NF1 gene.

As a parent, you expect that once you have a diagnosis, care will naturally follow. That wasn’t our experience.

Anaya’s early care felt fragmented. NF1 wasn’t well understood locally, and important checks were missed.

It wasn’t until we were connected with Tumour Support Scotland that everything changed.

Through them, we accessed a specialist NF1 clinic in Edinburgh — and at Anaya’s first appointment, they identified dangerously high blood pressure. Something that should be routinely checked in children with NF1, yet never once had been.

Further investigations showed plexiform tumours around her kidneys, causing the hypertension. Medication was started — something that could have been missed entirely without specialist input.

Despite my growing concerns, I was told Anaya didn’t qualify for an MRI “just because she had NF1.” But instincts matter. With persistence — and the backing of Tumour Support Scotland — Anaya finally had her first MRI. It showed Unidentified Bright Objects (UBOs), common in NF1, but in her case, they were the earliest signs of tumours forming.

In December 2020, we heard the words no parent wants to hear.
Two brain tumours. One on her optic nerve.

Without immediate chemotherapy, Anaya would lose her sight.
The next 20 months were unimaginably hard. Chemotherapy. Long hospital stays. Serious reactions to carboplatin. Repeated admissions. At some point during treatment, a third brain tumour appeared. All while trying to give a child a normal life where possible.

In August 2023, Anaya completed chemotherapy. At the same time, her dad attended a routine MRI. In September 2023 — on the same day — we sat in two different hospitals, minutes apart, being told devastating news about both of them. Anaya’s scans were stable. Chris’s tumour had grown. He needed radiotherapy immediately.
Chris completed six weeks of radiotherapy in October 2023. For a brief moment, there was hope — but by August 2024, scans showed further progression. Chemotherapy tablets followed. The most recent MRI showed the tumour has doubled in size and spread.

Right now, all that can be done is manage his condition.

NF1 has reshaped every part of our lives.
It’s impacted our mental health, our finances, our family relationships. Watching your child endure treatment to save their sight — while watching the person you love slowly change due to tumour growth — leaves marks that never fully fade.

There is no cure for NF1. Only management. Only vigilance.

We were handed leaflets and sent home on diagnosis day. If my father hadn’t happened to see the “Funny Lumps” car that day, if Tumour Support Scotland hadn’t stepped in, I don’t know where we would be. I don’t want to imagine it.

NF1 affects 1 in 3,000 people, yet support is inconsistent, and access to specialist care feels like a postcode lottery. Our story involves two people with NF1 — but the ripple effect has touched at least ten others in our family through lost work, emotional strain, and constant worry.

This story is still unfolding. My partner’s future is uncertain. My children’s futures are uncertain. And every parent living with NF1 understands that fear.

But we also understand this: early diagnosis, specialist care, and being listened to saves lives, saves sight, and saves families.
If sharing our story helps just one parent trust their instincts, push for answers, or find support — then it matters.

19/05/2026

JANICE'S STORY

Four Generations. One Diagnosis. A Lifetime of Love, Learning, and Living.
When your child is diagnosed with Neurofibromatosis type 1 (NF1), it can feel overwhelming. The questions come fast. What will their life look like? How severe will it be? Have I missed something? Am I prepared for this?

In our family, NF1 isn’t something we encountered suddenly or learned about through leaflets and hospital appointments. It’s something we have lived with — across four generations.

It began with my dad. He lived with NF1 at a time when it was rarely talked about or understood. His case was the most visible: multiple fibromas that marked his skin long before anyone knew his story.

The world could be unkind — staring, judgement, whispered comments — but he met it with quiet strength and dignity. To us, he was never defined by how he looked. He was simply Dad. Strong. Present. Loved. From him, we learned resilience before we ever learned the name of the condition.

My sister and I both inherited NF1, but in a much milder form. Café au lait marks. A few small fibromas. Signs you might not even notice unless you knew what to look for. Growing up, NF1 didn’t stop us living, learning, or dreaming. It became part of us — not something that limited us, but something we understood and managed. What NF1 gave us, unknowingly at the time, was awareness.

Then came our children.

Both of my daughters also have NF1, again mild. One developed a plexiform neurofibroma on her shoulder, which was removed under local anaesthetic. We’ve all had fibromas removed over the years — straightforward procedures, handled calmly, without fear. Regular appointments. Monitoring. Conversations that were honest but reassuring. NF1 was present, but it was never the centre of our lives.

And now, the next generation.

My granddaughter is still a baby, just beginning her journey. A few café au lait marks have appeared on her tiny body — the familiar signs we recognise so well. But unlike generations before her, she is surrounded by knowledge from the very beginning. Early monitoring. Informed care. A family that understands what this diagnosis can mean — and just as importantly, what it doesn’t have to mean.

What stands out, looking across four generations, isn’t the differences in severity — it’s the sameness in how we live with it. NF1 hasn’t defined us. It has connected us. It’s one thread in a much larger story woven with love, humour, patience, and determination.

NF1 is genetic, lifelong, and unpredictable — but it can also be mild, manageable, and closely monitored. Awareness changed everything for us. Knowledge replaced fear. Regular check-ups replaced uncertainty. Conversations replaced silence. A diagnosis became information, not a definition.

For parents raising children with NF1: you are not alone. A diagnosis does not determine your child’s future. Lives can be full. Childhoods can be joyful. Families can thrive. Early awareness, education, and support make all the difference.

By sharing our story this Neurofibromatosis Awareness Month, we hope to offer reassurance, understanding, and connection — for parents navigating this path now, and for the generations still to come.

Tumour Support Scotland is here to support children and their families up to the age of 25 — because no family should have to navigate NF alone.

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16/05/2026

REBEKA'S STORY

Rebeka entered the world eight weeks early—tiny, fragile, and facing challenges from the very beginning. It was a frightening time, made even more difficult by the uncertainty, as she initially only responded to light.

At just five months old, we began to notice unusual marks on her skin. After a hospital visit, a doctor mentioned Neurofibromatosis type 1 (NF1). I remember asking them to write it down—I had never heard of it before. They gently advised me not to search online, as it often shows the most severe cases. But even without Google, the unknown felt overwhelming.

What followed was a long journey of hospital appointments and specialist care. Rebeka faced visual impairment and was later diagnosed with an optic glioma. She required ongoing scans, physical therapy for cerebral palsy, and support from a dietitian due to food and drink intolerances.

As she grew, we also navigated behavioural and developmental challenges, including autism and ADHD. Finding the right school and ensuring she received the support she needed was another hurdle.

At times, it felt like too much for any family to carry alone.

But we weren’t alone.

The support we received from Funny lumps and Tumour Support Scotland made all the difference.

Karen, in particular, walked alongside us every step of the way. She helped us understand NF1, supported us through difficult moments, and welcomed us into a community where we never felt isolated. Through events, guidance, and constant reassurance, she showed us that while life may look different, it can still be full of hope and joy.

Because that’s what this journey has taught us—this isn’t the end of life as we knew it, but the beginning of a new life. A life that may be different, but is just as meaningful, and in many ways even more rewarding.

Every milestone Rebeka reaches feels like a victory worth celebrating.

Through it all, our bond has grown incredibly strong. I’ve learned so much about how to support her—whether it’s through daily muscle massages or simply reading together and sharing quiet moments.

Last year, when my own health took a turn, Karen stepped in once again without hesitation. Her kindness and support reminded me just how much this journey has meant—not just for Rebeka, but for our whole family.

We are truly grateful - for everything!!

14/05/2026

Getting a proper break as a parent carer can sometimes feel impossible

The Scottish Government is consulting on Unpaid Carers’ Right to Breaks. This is a chance to say what support actually helps, what doesn’t, and what still feels difficult to access.

We’re holding an online discussion forum on Tuesday 19 May from 11am-12.30pm for parent carers of disabled and additional needs children and young people in Scotland.

There's no preparation needed, we just want to listen to your experiences and views. We’ll use what families tell us to help shape our response to the Government's short breaks consultation.

Tuesday 19 May
11am–12.30pm

Register here: Unpaid Carers' Rights to Breaks & Support Plans in Scotland -Have your Say! Tickets, Tuesday 19 May | Eventbrite

Online via Zoom (camera on or off, whatever feels comfortable)

Can’t make the session? You can still share your views with us at [email protected] before Tuesday 19 May 5pm.

13/05/2026

JP'S STORY

Hi, I’m Jon Paul, though everyone calls me JP. I’m 20 years old, and my life has never fit neatly into a box.

I live with Neurofibromatosis Type 1 (NF1), autism, ADD, nystagmus, and a learning disability. I also have a large plexiform tumour on my ankle which can be painful at times. Some days it slows me down — but it has never stopped me from being me.

One of the things I’m most proud of is playing disability football. I’ve been part of the team for five years, and it’s given me confidence, friendships, and a real sense of belonging. Last year was unforgettable — we won the league cup. Standing there as a team, celebrating that win, proved to me that challenges don’t define limits.

Off the pitch, I’ve spent the last three years at college studying Light Vehicle Maintenance. Cars are my passion. I love understanding how things work, taking them apart, and putting them back together. There’s something satisfying about fixing a problem with your hands and seeing the result straight away.

However, life doesn’t always go to plan. My poor eyesight has recently started to restrict my job options in the motor industry, so I’m now exploring a possible career change. That can feel scary — but it also feels hopeful. I’ve already faced challenges most people never see, and I’ve learned that adapting doesn’t mean giving up.

I might do things differently, and sometimes life is harder than it should be — but I’m determined, motivated, and ready to see what’s next.
This is just another chapter, not the end of the story.