Archive | Members stories

Fundraising with Sonal Abram, “Sonal Desai Dishes”

CAUK member and passionate cook, Sonal Abram has written an Indian-Italian fusion cookbook “Sonal Desai Dishes“.

After recently seeking help from CAUK, Sonal has benefited from valuable information, support and community that our charity provides – and now she wants to give back! As a way of raising funds to help us continue the work that we do, Sonal has decided that she will donate £2 of every purchase of her cookbook to CAUK.

To purchase the book, and contribute to her fundraising efforts, simply go to and add “CAUK” after your name.

Of her recent experiences Sonal says;

I am very happy to be part of the CAUK, what a wonderful charity providing so much awareness about cavernomas to the medical profession as well as the general public. I have had cavernomas for a number of years, but only recently had a more serious experience, and this is what led me to seek out CAUK as a source of support and guidance. I have really enjoyed participating in the great webinars that CAUK runs with its members, and have valued hearing about other members’ experiences and getting some brilliant talks

About the Book

The book, Sonal Desia Dishes, includes a blend of many different cuisines, including pasta, buckwheat and bulgur wheat recipes, that use Indian spices. Her family favourite recipes are Baked pasta with orange lentils, Paneer makhani, Chole puri, Bhindi, Dosa and Quinoa rocket salad. She hopes people of all ages will be able to enjoy these recipes, as her intention is to increase knowledge of healthy but highly enjoyable foods.

About the Author

Sonal lives in Cambridge where she started a number of vegetarian cookery classes. She started to teach cookery as an evening class when she worked at Cambridge University, and her first batch of students were her colleagues from her laboratory!
She truly loves teaching cookery, and has been invited to many cooking demonstrations. She has also run various Saturday workshops and cooking demos for various charities and summer festivals.

We are so grateful to Sonal for this fundraising initiative.
Thank you for your purchase!

Katy, Surrey

The Adventures of Clive the Cavernoma

I’m going to take you on an adventure. A brain adventure. As that is what our little cavernomas have decided to take us on. My adventure started when I moved to the Southern Hemisphere, to experience working as a doctor in a slightly less stressful health system, with sunshine on tap and in the land of the all day brunch that is Australia. What I didn’t have in mind was getting to know the Australian Health Care System rather too well.

I am proof that doctors make the worse patients. After ignoring intermittent right sided pain and weakness for the best part of 2 months, my body decided to give me a wake-up call. Suddenly, after finishing a ward round, I had a wave of vertigo, which was swiftly followed by loss of feeling of my right arm. I really was in the right place at the right time when it happened. I was suddenly the “stroke call”, which is the alarm that goes out on doctors pagers, telling them that there’s a patient that needs urgent review with a potential stroke. This alarm always causes my heart to race, but this time my heart was racing even faster as I was the patient.

Pre-Op Clive

The scans showed a bleed in my left parietal lobe from a cavernoma in the sensory cortex.
I named him Clive.

The next 9 months of the adventure brought me to have close encounters with hospital food and 4am blood pressure checks. You see Clive was not a happy Cavernoma and he enjoyed throwing the odd tantrum. I had five bleeds in total during this period and the deposits left over from the breakdown of the bleeds caused partial seizure epilepsy, which refused to be kept in check with medication. During this time I learnt to appreciate the invention of the pill box, which kept me organised as I titrated up and down multiple drugs regularly.

With the growing side effects of the medication that weren’t controlling the seizures, episodes of drug toxicity and a constant “cotton wool brain” from the “oozing” of Clive, a decision was finally made. I had awake brain surgery to remove Clive the Cavernoma and the deposits from the bleeds.

Firstly AWAKE brain surgery was the funniest experience I’ve ever had. I said some embarrassing things in that operation (which I had asked to be recorded), and it still feels very surreal. On a serious note though, the thought of it is definitely scarier than the experience. I was woken up, slightly disorientated, but very comfortable and with a slight feeling of pressure around the head. Easy.

Learning to walk again

Clive, Post Op

Clive, Post Op

Post-op was the hard part. I woke up unable to feel or move my entire right leg. I still remember the feeling when I stood for the first time, in the huge forearm support frame, looking at my right leg with distrust. It was as if my leg had turned into a feather and I was asking it to support my entire body weight. A goal chart was essential at this point to get myself through the next few weeks in hospital. After practicing all weekend with my physiotherapist brother I was able to surprise the medical team and physiotherapists when I finally walked down the corridor unassisted and subsequently out of the front door with my discharge papers. Freedom!

The final adventure Clive was going to take me on was that of rehabilitation. A time of naps, exhaustion after walking 100 metres, the return of the “cotton wool brain” and the need for intense concentration in order to put a sentence together. Any increase in pressure led to a “headquake” feeling, as if the bones were like tectonic plates grating together, making sneezing an undesirable activity. The frustrations of not being able to do what I used to do such as running and reading were difficult. Neuro recovery seems to take you forward for a few days and then backwards in huge steps the next. However with time, patience, perseverance and kindness, I have passed milestones in these last 6 months of rehabilitation and every day feeling a little step closer to my old (now Clive less) self.

This has been the easy part, telling you my story. What I really want to talk about are the lessons that I’ve learnt, in the hope that any one of them may be useful for both Cavernoma patients and relatives.

  • Lesson 1: ‘Clive the Cavernoma’. Naming it sounds like an odd thing to do but it worked wonders as a coping mechanism. It’s an odd feeling knowing that there’s something there in your brain that you have no control over, but giving that thing a name, something that you can refer to or express emotions at, made acceptance that much easier.

  • Lesson 2: My stroke…The hidden injury. Post Op I remember getting onto a crowded bus and thinking how on earth do I get a seat? To strangers I looked pretty normal. When really even balancing for a few seconds was exhausting. Unlike broken bones, brain injury is hidden from sight, secretly causing mischief to the way the body functions. Reminding yourself and everyone else around you is a key step to recovery and how you get that seat on a bus.

  • Lesson 3: That epic goal chart. Post injury or post-op…goals are the way to keep yourself looking forward. From showering independently to running that 10km 9 months later, each goal is no less greater than the other.

  • Lesson 4: Feel the sand beneath your toes and swim the ocean blue. After ending up with right leg sensory loss, I found that contact with sand and water was a great way to send feedback to the brain. Walking on sand is perfect for testing your balance too whilst water helps to awaken those lazy muscles and rejuvenate those lost neuro-connections. Shallow end first!

  • Lesson 5: Rehabilitate…’Pilates is gaining the mastery of your mind over the complete control of your body’ Joseph Pilates. With weekly Pilates sessions, I re-gained coordination, proprioception and strength that I had lost from having brain surgery.

  • Lesson 6: Sleepyhead. Brains need naps post injury. Others areas of the brain are now having to take over the job of the area that’s injured, an exhausting business. Fatigue has been my greatest nemesis and I find that when I overdo it, the neurological deficits get worse. Listening to your body is essential for recovery and the all-important little nana naps throughout the day will help the brain re-charge.

  • Lesson 7: Love your brain. Care for it, feed it, listen to it; don’t let it trick you into thinking you can undertake a multiple of tasks…oh whilst learning how to walk again. Time, rest, gentle exercise and a good diet is what the brain needs to recover and keep it healthy. The best advice I was given was this…”Don’t forget, the brain takes longer than a broken leg to heal”.

  • Lesson 8: I have a hole in my brain…The greatness of neuroplasticity. Some other wonderful neurons in my brain are now doing some weight lifting and have taken on jobs that the injured part can no longer do. 6 months post-op, I can walk, run (sort of) and almost balance on one leg. Neuro rehab is not an easy path and as a patient you take your friends and family along this rocky path with you. With all injuries and illnesses it’s mentally and emotionally exhausting for everyone involved, but the most important thing I’ve learned is to share the experience. Which helps, when you can’t quite function on those brain exhaustion days, to know that your people are right here with you. Don’t be hard on yourself, push yourself, but not too much and as always #loveyourbrain.

Katy on a boat, 2017

Austen, Kent

I was a busy school teacher, not long in a new job, marking test papers one evening in May 2014, when my left arm grew weak. I was sat down at home and put it down to muscle tiredness so simply took myself off to bed. The following morning I could not use my left hand at all to button a shirt for work, so walked myself to the nearest A&E. I think the receptionist had a good idea of my symptoms, because within minutes I had my first ever brain scan and was lying on a hospital trolley to be told that I had suffered a stroke. The words were unimaginable to me; I was a keen runner and cyclist with good diet and tea-total lifestyle. Utter shock and disbelief rushed at me in equal measure as I considered letting everyone down at my school that day.

The doctors began studying my right parietal intracerebral haemorrhage, but it was only after being ambulanced to King’s College in London that the cavernoma was suspected. I had never heard of this word before, like most sufferers. There were a few days of debating, then discharge home, before an MRI in July showed a cavernoma to be the cause. Situated in an eloquent location of the brain (pre-central gurus adjacent to motor hand area) this explained my first symptoms of left arm weakness. 2 seizures in hospital saw the prescription of Keppra, again a drug I had never heard of but one I have been taking ever since. I recovered after weeks of rolling playdough and learning how to place a cup on a target with my left hand, then let go again. Falling just before the summer break, I was back at work the next September, business as usual with all the strains of 30 seven year olds in a classroom, slightly adjusted in confidence but with every good intention of getting on with my life again.

The year went well until 10th July 2015 when I experienced a slight loss of sensation over a few days but in my left leg this time , that caused me to slightly lack balance on my bike ride to work but was nothing like my first bleed the year before. So here I was back in hospital, faced again with the return of my symptomatic cavernoma.

Two years ago, the thought of brain surgery would make me panic, and the location of my cavernoma in an eloquent brain area made the decision harder, but I decided to face the storm instead of living life fearing its return. Therefore, after much discussion with my fantastic consultant and team at King’s, (2 bleeds within 18 months made the decision for surgery easier because risk of further bleeds earlier on in the life of a symptomatic cavernoma is significant) I made up my mind for surgical excision. There followed other scans for intra-operative guidance, one being passing small electric charges through my brain to make my left side move so that the surgeon could plan his road map in and out, then on the 9th November I had attempted removal surgery. However, after approximately 6 hours, the surgery was unsuccessful due to position and potential effect of paralysis upon my left side, so I was awoken with this news and left feeling very confused. However, I had faced a fear and done all I could to live life without a cavernoma.

So where does this leave me today? I must recommend Caver Buddies; I made a wonderful friend in Scotland (via the Facebook group) who explained the process of surgery to me and really helped me through my questions over the phone. I have also attended some amazing lectures at the annual forum in London, meeting new members of the Alliance and sharing my story. As I write, I am back at work and have lived symptom free for over a year now. Also, having run marathons previously, the doctors advised me not to try one just yet (avoid dehydration) but I trained for a half marathon in October this year and ran my fastest time ever! Well, they did advise me to get on with my life! I believe that running is so good for getting my blood pumping around my brain, giving me an excuse to really work my left-sided limbs and has helped me forget about the cavernoma for a while
So the dilemma remains – do you wait for another bleed and never do things you love doing, allowing the cavernoma to define you, or take the doctor’s advice and grab each day, live it healthily and to the full because the cavernoma may never reveal itself again? I have chosen the latter, but would not have got to this point without my friends and advisors in the Cavernoma Alliance, for whom I and my family are so grateful. One day, I will run a marathon for them.

Annabel, Hertfordshire

Jasper’s symptoms began in late 2008.  Initially we were completely unaware of what we were dealing with, despite his younger cousin having had emergency surgery to save his life from a brain-stem bleed.  At the time, we were not aware of the familial form of cavernomas, and Jasper’s symptoms were vague to begin with – a ‘tingly eye’, and a ‘weird feeling’ in his throat.  As his symptoms grew we managed to video an episode and my GP swiftly referred us to the John Radcliffe hospital.  Jasper was scheduled for an MRI in March 2009, and we were given the results immediately, confirming that Jasper had several cavernomas, in particular a 4.5cm one in his right temporal lobe, which they suspected was causing his seizures.  His seizures continued to worsen, culminating in a trip to A&E after a prolonged episode of vomiting and facial palsy.  He was transferred to the Radcliffe and monitored, at which point we decided surgery was our best option.img_7622

Jasper had surgery in September 2009 at the Radcliffe.  Within a week he was discharged and after a short spell of home-schooling, was back at school after the October half term.  He had a few seizure episodes in the first few weeks after his operation, but these decreased significantly within a few months.  He continued with his medication (Keppra) for about a year.img_7621

Next weekend marks 7 years since Jasper’s surgery. Now he is studying for his GCSE’s and will be heading to Borneo next summer to take part in a 3 week World Challenge.  He remains seizure-free and medication-free.  He has decided himself that he doesn’t wish to have regular scans, and we see the neurosurgeon every 2 years.  He is a bright, thoughtful, inquisitive young man who hopes to work in the film industry and apart from his scar, mostly hidden by his hair, it would be impossible to tell that he has had any health issues, let alone brain surgery.

Meanwhile, his 12 year old sister is currently on the waiting list at GOSH for surgery to remove a cavernoma from her left temporal lobe.

Lisa’s story

Lisa, from Accrington

Lisa, Accrington

I was first diagnosed with a Pontine Cavernoma, May Bank Holiday weekend back in 2008 (aged 23).

Previous to the diagnosis, I had been very stressed and had just completed my degree, I was also working three jobs.

I had experienced symptoms for around five days or so prior to my diagnosis, ranging from fatigue, dizziness, back ache, numbness in my left side of the body and right side of the face.  My temperature perception had changed also.
I had been to see my GP who said I may have Labrynthitis?  I then went to the A&E at Royal Blackburn Hospital the following day as my symptoms were becoming more prominent.  I was told that I may have an inner ear infection and to put olive oil in my ear and take paracetamol?  The next day, I went back to A&E again and was almost sent home – yet again.  My eye and mouth had drooped to one sider and was admitted for an MRI scan which later found the cause of the problems.  I was in the Royal Preston hospital for around 2 weeks and it took me a further 12 week to recover.

I was referred to Sheffield Hallam (Sept 2008) to see if I was a suitable candidate for Gamma Knife Surgery.  I was, but declined any treatment and stuck by the wait and see approach.  I continued to have annual MRI scans for the next four years.

Following my annual MRI scans, my lesion had increased in size and I was then re-referred back to Sheffield for the GK treatment.  I also found out that I have had a couple of smaller bleeds too between my last scan which i was unaware of?  I had the GK treatment in October 2012 at the BMI Thornbury Hospital.

Having Gamma Knife Treatment

January 2013, just as I was about to take a secondment to a different team within the NHS, I had another big bleed – right-side cerebellar peduncle bleed in the Pons.  This bleed was the worst and I was off work until the end of April.  I had a lot more symptoms this time too and it took over two years to feel somewhat ‘normal’.

I still have some numbness/altered sensation in my left leg but everything else has pretty much recovered physically.  I do suffer with health anxiety but try and manage this the best I can.  I work full time and drive too which I am grateful for and glad that wasn’t taken away from me.

I changed neurosurgeon in 2013 to Mr. Neil Kitchen at Queen Square due to him being ‘the best’ with regards to understanding and management of my condition.  I was discharged from him January 2015 and no longer need any more scans unless I have any symptoms again – hopefully not 🙂

In April 2010, I participated in a New Beetle rally, driving from Lands End to John O’Groats over 5 days, raising around £800 for CAUK.

New beetle Rally - Lands End to John O'Groats.

Kate, Hertfordshire

My Story

I wanted to share my story to hopefully give some comfort to others who have recently been diagnosed with cavernoma, I vividly remember the fear and confusion in the weeks and months after my diagnosis.

My first symptoms began in May 2015, at the time I was 5 months pregnant with twins.  I had a constant tingling in my right hand which was very slowly getting worse, but had been going on for a few weeks. The doctor thought it was probably carpal tunnel syndrome as this is a fairly common pregnancy side effect. Within another week the tingling had got stronger and my right cheek was now burning and my tongue felt strange.  Again, the doctors and midwives thought it may just be pregnancy related, there are more side effects with twins and my son was sitting very low on the right hand (affected side) so we thought maybe he was pressing on a nerve.

The next event was that I started very slightly losing balance to the right, it was all very subtle but it had happened a few times. My mum always worries (thankfully!) so when I told her I was now off balance too she insisted we went to A & E. My doctor had referred me to a neurologist but that appointment wasn’t until September!

I had a fantastic A & E doctor examine me that day and he wasn’t giving up until he found the cause. After hours of examinations and tests he sent me for an MRI. This was very worrying as I had a large bump at this point and was concerned about side effects for the babies.

After waiting several hours waiting for the results the doctor came back and pulled the curtains around the bed, I thought then that this must be serious… He explained that I had a brainstem cavernoma, had likely been there all my life, and had recently had a medium/ large bleed.

It is difficult to say that my pregnancy definitely led to the bleed, but to me it seems likely. I have always been slim and had suddenly gained a lot of weight, the blood flow increases greatly during pregnancy and to top it off I had been prescribed Aspirin to help prevent pre-eclampsia. I have also read that the changing hormones experienced during pregnancy can be a factor, although this is still debatable.

When you are first diagnosed it is tempting to compare your symptoms with others, what I have learned is that we are all very different and a bleed in the brainstem that is a fraction of a millimetre different from someone else’s can give very different symptoms.

The next decision was a very difficult one, should we go with an early delivery for the twins in case I had another bleed? But without the babies needing breathing (and other) support due to prematurity. It was eventually decided I should have a Caesarean at 34 weeks gestation. I had to have a general anaesthetic as the doctors were concerned that if I had an epidural it would change the pressure in my spinal column and possibly affect the cavernoma.

Kate, Hertfordshire

Kate, Hertfordshire

All went well with the delivery, although I was petrified going down for the general. The twins were born weighing 4.4lb and 4.8lb which is pretty good for 34 weeks. They only had to spend two weeks in The Special Care unit being monitored.

My symptoms got quite a bit worse in the months afterwards. My whole right side was affected from tip to toe. I had a very thick tongue which lead to slurred speech, tingling and burning in my cheek . I lost the use of my right hand so couldn’t use cutlery, write or even safely hold the babies. My right arm felt very heavy and weak at the same time, my right leg and foot was also heavy and I walked with a pronounced limp for many months.  My eyes were affected and would feel dizzy watching anything moving quickly on the TV or when in the car. The strange thing was throughout the whole thing I never had a headache which I believe is quite a common symptom.

I had MRI scans every three months initially, now they are yearly. The neurosurgeon didn’t think I’d had a further bleed and that it is often the case that symptoms get worse before they get better.

At the time with the fear and confusion it is easy to attribute everything to the bleed. One morning after a shower I started shaking violently and nearly collapsed. That turned out to be severe Anaemia due to blood loss after my caesarean.

Very slowly things start to improve. I walked for miles with the babies in the pushchair and the dog, I had physio which definitely helped although the neurosurgeons didn’t think it would be that beneficial, it definitely helped me.

Now, 16 months on, I am much improved. My remaining symptoms are; a slightly numb right hand that is slower than it used to be, I sometimes struggle with tasks that require dexterity. But, thankfully I can now write and do everything that I need to do which is a huge relief. My other symptoms come and go and occasionally I get a slightly heavy leg and numb feeling in the ball of my foot.

For me the hardest thing is coping with the worry, that constant assessment of my symptoms and wondering ‘is that a new or an old feeling’.

I have had acupuncture to ease the symptoms and relax me which helped with my sleeplessness. One of the most useful things I did was enrolling on a mindfulness course which helps you to live in the moment and not dwell on the past or worry about the future.

It was decided that due to the location of the cavernoma in the brainstem it is probably better to monitor it rather than operate. I went to Cavernoma Alliance’s UK’s CaverHub  with Dr Paul Jarman and concluded that I had made the right decision for now which is to ‘watch and wait’ rather than have intrusive surgery. All cases are of course different.

I wish you all the best of luck on this journey and thank the Cavernoma Alliance UK for all their work and support.


Editor’s Note

Prior to her diagnosis Kate was a commercial airline pilot. Kate is attempting to get her licence back.



Jill, Worcester


Jill, Worcester

Jill, Worcester

I was diagnosed with a cavernoma in October last year, after first displaying symptoms. Following a CT and MRI scan, it was eventually diagnosed as a small cavernoma. The consultant’s opinion was to monitor conservatively and have an MRI x 6 monthly. My most recent appointment in July showed some shrinkage of the cavernoma, which I understand is unusual. My consultant now thinks it may be a small AVM. It was explained to me that this may be possible to treat with radiotherapy/Gamma knife.


My consultant has recently had a meeting with his team to discuss a treatment plan, beginning with an angiogram to clarify the situation. I am currently waiting for further information.





Ffion’s story

FfionFfion was diagnosed at 11 months, following pneumococcal meningitis, with multiple brain cavernomas. Cavernoma are blood vessel malformations that can leak blood into the surrounding brain tissue and cause damage, like mini strokes. So far Ffion is doing well, she has some slight physical signs, however we don’t know how it will affect her over time – its a case of watch and wait. We are raising money for two organisations that are supporting us with her care. Great Ormond Street Hospital who are looking after her ongoing care, and the Cavernoma Alliance UK which provides support to sufferers and families facing this condition.

Our daughter is amazingly resilient – an absolute trooper, and we want to do whatever we can to help those helping her. This is a long term condition that she will have for the rest of her life, and it could strike at any time. But we dont want it to limit or define her, so we will support her in all ways and for always. We have some amazing people doing some really great challenges so please support them!

We would like to raise £3000 in total, 50% of the money raised will be donated to Great Ormond Street Hospital and 50% to Cavernoma Alliance UK. Ellie’s Virgin money page can be viewed at:

Anthony’s story

‘On March 23rd 2009 I suffered a seizure at work and spent a few days in Hillingdon hospital. I have since been diagnosed as having 10 cavernomas one on the front left of my brain and one on the front right of my brain and a cluster near the back next to my spine. This is a fairly rare condition. The cavernoma is a blackberry like formation which seeps blood into the surrounding tissue. As this is gradually absorbed it leaves traces of iron, known as haemosiderin, which cause the seizures. I am now on pills to help stop anymore seizures, But I still have my good and bad days where I get very tired and suffer from very bad headaches.
And for those that don’t know me:

I now work at London Heathrow Airport as an Aircraft Dispatcher for BA, During early march 2009 I started to get mild twitching in the face around the mouth area and thought nothing of it, but over the following weeks it started to get worse, When I was on the aircraft speaking with the captain regarding fuel figures and over weight issues it started again but this time I was a lot worse, It sounded as if I was drunk because my words would come out slurred, Now I was worried so booked to see my local GP, who was told at the time my older brother had suffered from this same illness that I was to have later on in the month, My local GP told me to film it on my mobile phone what was going on next time so I could show him. When, to cut a long story short, I went into work that day on my late shift, I had been in my office no longer than 15 mins when I felt another attack coming on. Little was I to know this would end up with me in hospital, I lost all control over my left side of my face and the side of my mouth dropped and I could not speak. One of my co-workers caught me from falling on the floor. I ended up in hospital and found out I have two lesions one on each side of my head at the front and a group of 8/10 near the back, This was just 4 days after my 40th birthday, I was signed off for a few months but went back to work in July 2009.

I ran the London Marathon In a time of 5hrs 31:38 which for me was a great time and raised over £1000 for Cavernoma Alliance bearing In mind I have never run further than 13 miles In one go was one of the hardest things I had ever done and very emotional.

Running shoes back on and no training turned up on a cold January to run the Winter Run 10k In London and through a very generous donation raised another £1000 for Cavernoma Alliance.

2015 (Dark Months)
From March 2015 I sank into a deep depression and was not far from wanting to take my own life (yes I thought about It and nearly did It one night on my way home) but I sought help with my family and girlfriend and battled without pills as It could raise possibility the chance of me falling Into relapse with my main Illness, Many nights with me not sleeping and many tears later I’ve battled through It and come out the other end.

2015 (October)
I’m back at work at LHR still dispatching but am now part time for the time being for my health reasons and it’s helping.

2015 (Christmas Eve)
Yes my girlfriend is now my Fiancée and also my rock ……..
Anthony 2
Yes crazy idea – lets join a group of others (35) and cycle to Paris.On the 14-17th July 2016 I will be cycling to Paris from Windsor to raise money for two charity’s
Cavenoma Alliance UK and Pace. (Cavernoma Alliance UK) (Pace)


Kirsten and Fraser

Fraser is my son, aged 6, who was diagnosed with multiple cavernomas of the cerebellum when he was just two years old. He had been a premature baby and was having difficulties with walking. It took a long time for a definitive diagnosis to be made, as other neurological conditions were also suspected, including AVMs and brain tumours. Fraser’s cavernomas were bleeding, and increasing in size, three of the five had combined to make a giant cavernoma that was considered life-threatening.

Six months ago, following the advice from several neurosurgeons, we decided that surgery was the only option if our child was to have a chance of living a normal life. Fraser has recovered well, but he still has two cavernomas. He has also tested positive for CCM1, a genetic marker for hereditary cavernomas which means he may well continue to grow more cavernomas throughout his life. Happily, it is now possible to eradicate the gene, which is a great relief for parents who are worried not only about passing it on to their children, but also about how the gene will affect their own children’s decisions about having families in the future.

As a family we have learned to appreciate each and every day. CaverFamilies, run by CAUK, allows us to meet and interact with other families like ours. CaverFamilies have events (days/weekends), enabling children like Fraser and families like ours to support, and be supported by, others who understand his condition. The children really get on together, which helps them to feel less isolated.

Fraser is well educated about his condition and is learning to deal with it psychologically as well as physically. He gave a talk at his school, taking his brain scans to show the class what cavernomas look like and to explain what they are and how they can affect lives.

Fraser doesn’t let his cavernomas stop him from living a full life. He keeps active and really enjoys sport. Watch out for him in the Paralympics when he’s older! As Fraser says, “I will never be cured, but I will always be awesome”.


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