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'I've been living with this brain tumour for three years now ... but I still think I am so lucky'

By Stephanie Bell

Teenager Danielle McGriskin discusses her inspirational efforts to raise awareness of her illness and her mum Amanda pays tribute to her daughter’s amazing positivity.

Fate has dealt mother and daughter Amanda and Danielle McGriskin a cruel hand, yet you have to dig deep to find any hint of sorrow in this optimistic pair. Their attitude is awe-inspiring and only positivity radiates from both of them as they recall the ups and downs of what has been a traumatic three years for the family since Danielle, now 17, was first diagnosed with a brain tumour and fluid on the brain.

With her long glossy brown hair and beautiful clear complexion, the pretty teen is the picture of health as she sits beside her mum on the sofa in their tranquil home in the village of Upper Ballinderry, Co Antrim.

There is nothing in the 17-year-old’s bright demeanor to suggest she is in pain (which is a constant in her life) and it is a shock when her mum reveals that the effort of simply doing our interview can leave Danielle drained of energy.

These severe symptoms have greatly restricted Danielle’s life so that outings have to be carefully planned in advance and even something as simple as meeting her friends for a coffee can leave her exhausted.

It’s a part of her illness Danielle, who attended Hunterhouse College in Belfast, very reluctantly talks about because this tremendously determined young woman would simply not cope well if people were to give her special treatment.

“I am luckier than most and I have to learn to live with it and that’s ok, I don’t want people treating me any differently, that would make life unbearable,” she says with heartfelt conviction.

What’s more important to Danielle is her mission to raise awareness of the symptoms of brain tumours which she has been doing with remarkable success since shortly after being diagnosed at the age of 14.

Her efforts have seen her pick up a number of prestigious awards including in 2013 The Diana Award: Courageous Citizen Award and the Belfast Telegraph Making the Difference Awards: Spirit of Youth Award and this year Cancer Research UK’s Little Stars Award.

Thanks largely to her efforts, thousands of people across Northern Ireland are now aware of the Headsmart campaign aimed at highlighting the symptoms of brain tumours which too often go unrecognised.

Danielle is relentless in her drive to get the message out there. She has met the Health Minister, Edwin Poots, had meetings with the Public Health Agency on the importance of a public awareness campaign and has just this week been invited to address key decision makers from the health boards and MLAs at a special meeting at Stormont in October.

She takes it all in her stride as she keeps focused on her main goal — ensuring no one struggles for a year like she did before her diagnosis. Danielle is also passionate about raising funds for research into brain tumours in support of The Brain Tumour Charity and to this end set up the Danielle McGriskin Fund, the first supporter group for the national charity in Northern Ireland.

In the past three years she has contributed a breathtaking £101,000 to research. Last month she was honoured to be selected by the charity to be one of its Young Ambassadors in the UK.

“Brain tumours are the biggest cancer killer of children and adults under 40 in the UK and yet receive less

than 2% of all cancer research funding,” she says.

“Shortly after I was diagnosed and became aware of that, I wanted to run a Zumba night to raise funds and it just went from there.

“All the money raised goes directly into research projects locally in Northern Ireland and the UK.”

Danielle, who has a younger sister, Rebecca (16), and a supportive dad, Brian (53), a regional manager for Santander, was diagnosed in July 2011 with a brain tumour and hydrocephalus, which is water on the brain caused by the tumour. She had endured 12 months of horrific symptoms which had been misdiagnosed as migraines.

“I had dizziness, poor balance, headaches and was vomiting,” she says. “I was seeing coloured spots and had visual disturbances for a year and was also very tired.

“I was told it was migraines and part of being a teenager. In February 2011 my parents arranged for me to see a neurologist privately and he also said it was just migraines. Then my dad took me to the optician who spot

ted swelling in my optic discs and recommended that I see a neuro ophthalmologist, which I did privately.

“That was June 2011 and he referred me for an MRI scan which immediately picked up the tumour and the fluid on my brain and I was told to go to A&E in the Royal.”

Head pain is measured on a scale of 1–10 and for that year before diagnosis Danielle’s was at nine. She described it as excruciating.

At the Royal she underwent immediate tests and it was discovered that the fluid had built up to a dangerous level and she had to undergo emergency surgery.

She has since had over 20 operations, mostly to manage the fluid on her brain. The tumour was diagnosed as low grade and inactive and at that point was not a major cause for concern.

However, Danielle continued to suffer and her consultant referred her to specialists in Bristol where a biopsy confirmed the shattering news that it was now Grade 2 and active, and would need treatment.

It was a traumatic time for the whole family as Danielle recalls: “Up to that point I wasn’t too worried about the tumour so it was a shock. It was scary but I took it all on board and dealt with it.

“I think at first my family was just relieved that after a year of seeing me suffering we had finally got a diagnosis and that something could be done about it.

“Finding out that the tumour was active and that I needed treatment was just another step on the journey.

“I am naturally positive so it was easy for me to stay like that and I don’t think about the bad things, I just think about getting better.”

Danielle underwent seven weeks of radiotherapy in Bristol last year, staying with her mum in a home funded by the charity CLIC Sargent.

It was hoped that the treatment would stop the tumour growing and doctors were both surprised and delighted when a follow up scan in April of this year revealed that it had shrunk by 2mm.

“That wasn’t expected at all so quickly and everyone was delighted and although 2mm doesn’t sound a lot, it is and it means it has delayed the growth which is great,” she says.

“I have a review in Bristol in October and they will only consider more treatment if the tumour becomes aggressive again.

“I will have headaches and other symptoms for the rest of my life but there are new treatments all the time and I just hope that there will be one in the future that will help me.”

Danielle’s illness has robbed her of much of her carefree teenage years but typically she is only focused on the positives — her campaign and fundraising.

“I want to help change the fact that only 2% of research funding goes into brain tumour research,” she says.

“When I held the Zumba night I wasn’t expecting the support I got, which was incredible, and it has continued to be incredible ever since.

“I have been trying to get the Headsmart leaflets on awareness of the symptoms to schools and youth groups and we have sent out thousands so far.

“I wrote to the Health Minister about the need for awareness and he invited me and my mum to meet him and now he has invited me to talk at Stormont to MLAs and key people from the medical world on October 21, which is brilliant.

“I want the cards to be automatically distributed to all schools and medical centres in Northern Ireland and to me it means a lot to have this chance to speak about something I feel so passionate about to people who can make a difference.”

Danielle also started an online blog on how she deals with her illness, which has had 30,000 hits. She also has a Facebook page for her fund with over 3,000 likes.

She missed out on doing A-Levels because of her illness and now plans to go back to school in September to do business studies with a view to working for herself as she knows her symptoms — especially the fatigue — will restrict her ability to hold down a full-time job.

“I have better days and bad days and I don’t know from day to day which one it will be so I can’t really plan much,” she says, “but I would like to set up my own business.

“The course I am doing is one which I can do from home, which suits well, and I already have ideas for a business which I am working on.

“I just take it in my stride. I can’t do things my friends are doing but I’m not jealous about that. I look at the things I have done and I can say that they only happened because I made them happen and I am grateful for that and for the quality of life I have.”

Mum Amanda (44) who works as a manager in a GP practice has taken a year off work to be with her daughter throughout her treatment.

She gives an insight into what it is like for a mum to see your teenage daughter’s life turned upside down by a serious illness.

“Danielle has had over 20 operations and people do ask me how you cope. I suppose the reality is you live on adrenaline most of the time.

You have to be strong in your emotions to keep going. By that I mean you have to understand your emotions and feel them and know that it is okay to be emotional, although there are times when you feel you are going to crash.

The diagnosis was scary and horrendous but it gave us an answer to why she was feeling so bad.

As a mum you feel so guilty and you think ‘If only I had known’, which is why we feel so strongly about the Headsmart campaign and raising awareness. I just know if I had been aware of the symptoms of a brain tumour I would have had a stronger voice in getting her seen to earlier.

She was very lucky — because of the fluid build-up she was at risk of going blind.

I think because I work in the health service I trusted and didn’t question it.

We have been very lucky as a family that however tough it has been for Danielle her positivity and get-up-and-go attitude has made it so much easier for us.

What you see is the real Danielle. She is so grounded and so level-headed and she can be so pragmatic and philosophical.

As a mummy you hold the emotions for them and yet there are days when I feel completely heartbroken for Danielle.

She knows her limits and she doesn’t crave attention or look for it, she just wants to do normal things and we take each day as it comes.

I am grateful for the year off work which has given us the opportunity to find out how we can best manage things so that Danielle has her independence, which is what she wants.

It has been tough. There is nothing worse than seeing your daughter in pain and you just wish it was you and not her.

I do have another daughter, Rebecca, and she is just as important to me and it has been tough on her as she has been doing her GCSEs.

She has coped brilliantly too, even though I haven’t been able to be there for her as much as I would have wanted to be.

Danielle has a real passion for helping to raise awareness and funds and she is grateful that she can do something when a lot of people who have brain tumours can’t.

I have asked her why she wants to put herself through it and her answer was, ‘I want to do it because I can do it and it is too easy to say I won’t bother and if we all said that nothing will change’.

That’s Danielle and she has helped me to appreciate what we do have.”

Brain tumour symptoms to watch out for in children and young people include:

In under-five/pre-school children:

- Persistent/recurring vomiting

- Abnormal balance/ walking/ coordination

- Abnormal eye movements

- Behaviour change, particularly lethargy

- Fits or seizures (not with a fever)

- Abnormal head position such as wry neck, head tilt or stiff neck

Children aged five-11:

- Persistent/recurrent vomiting

- Persistent/recurrent headache

- Abnormal balance/ walking/ coordination

- Abnormal eye movements

- Blurred or double vision

- Behaviour change

- Fits or seizures

- Abnormal head position

Young people aged 12-18:

- Delayed or arrested puberty

- Persistent/recurrent vomiting

- Persistent/recurrent headache

- Abnormal eye movements

- Blurred or double vision

- Abnormal balance/walking/coordination

- Behaviour change

- Fits or seizures

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