Student nurse Emma Ockwell, from Lincolnshire, will be one of eight people taking part in a Summer Solstice Skydive charity event on Saturday 23 June to raise money for the Children’s Brain Tumour Research Centre (CBTRC) at the University of Nottingham.
She has signed up to the event in honour of her daughter Ellie Barnicoat, 15, whose symptoms were overlooked by hospital doctors and GPs for almost a year before she was diagnosed with a pilocytic astocytoma in February last year.
After having emergency surgery to remove the tumour at Nottingham’s Queen’s Medical Centre, Ellie suffered a mini traneschemic attack - a type of stroke from a blood clot which causes brain damage - which has left the teenager with right-sided weakness, tremors in her right arm and leg, seizures, extreme fatigue and mood swings.
Emma said: "I have a severe fear of falling - I even have a panic attack if I go into our loft - but Ellie is my inspiration because she faces her fears every single day.
"She could have just given up on life and given in to depression. But she needed to prove to herself and everyone else that she is not defined by her brain tumour. She is a real fighter and she is my warrior princess."
Ellie and her family, from Welton in Lincs, had to fight for the emergency MRI scan which eventually revealed the tumour on one side of her brain stem and a fluid filled pseudomeningocele cyst on the other.
Over a period of 50 weeks, her symptoms of headaches and vomiting had been attributed to hormones, teenage migraines and dehydration and, less than a week before her diagnosis in hospital in Lincoln, she had been told she would have to wait a further eight weeks for a routine scan. It was only when Ellie’s mum and stepdad Philip insisted on an MRI after Ellie collapsed at school that the real cause of her illness was discovered, and she was transferred by ambulance to the Queen’s Medical Centre in Nottingham for specialist care through CBTRC.
Ellie is now at home and back at school preparing for her GCSEs, facing the challenges that her disabilities bring with a positive attitude. Originally right-handed, she has taught herself how to use her left hand - which has included applying make-up and styling her hair unaided, something which has been incredibly important to the image conscious teen.
She undergoes six-monthly scans, has regular physiotherapy and one to one assistance at school and needs to use a wheelchair when she is extremely fatigued. Her parents are hopeful she will be able to lead a normal life but know she will always need extra help and adaptations for some everyday tasks such as driving and will not have many of the freedoms enjoyed by her friends.
Emma added: "Working in the NHS I know how incredibly expensive it is to send a patient for an MRI scan and that doctors need to use stretched resources carefully. But if Ellie had waited another eight weeks for a scan, would her tumour have grown? Would it have killed her? The doctors have been unable to tell us but that one scan could make all the difference."
Emma and her family support the national Headsmart campaign , led by the CBTRC in partnership with The Brain Tumour Charity and Royal College of Paediatrics and Child Health. It aims to raise awareness of the common signs and symptoms of a brain tumour in babies, children and teenagers and since it began in 2011 average diagnosis time has halved from 13 weeks to 6.5 weeks.
And while they have welcomed a recent £45 million funding boost for brain tumour research, announced by the Government following Labour peer Baroness Tessa Jowell’s fight against the disease, which claimed her life last month, they believe more could be done.
"Carcinomic brain tumours receive just five per cent of the total funding given for cancer research. It shouldn’t take the death of someone high profile to get this result when children are dying of this disease every day. It’s really sad that people whose lives have been affected by this are having to raise the money themselves."
Emma, who is making her jump from Brigg in Lincs, is hoping to smash her fundraising target of £400. She is among a wider team of University staff and students and families of patients affected by brain tumours who are taking part in tandem skydives at Langar Airfield in Notts and hoping to raise a total of almost £3,500.
Among those taking part will be 17-year-old Logan Waby, of Lincs, who will be making the jump in support of his six-year-old brother Charlie Dowdall, who has been fighting a brain tumour since March 2014. Charlie has lost his sight as a result of his illness, is at risk of stroke due to vessel damage in the brain and is currently travelling to Great Ormond Street Hospital every three months to be treated with a trial drug. Logan will also be using the skydive as an opportunity to say thank you to Professor Richard Grundy and colleagues for the care they gave Charlie during his treatment at the Children’s Brain Tumour Research Centre.
The money raised will support the work of CBTRC, established at the University of Nottingham more than 20 years ago to improve the understanding, treatment and outcomes of children and young adults who develop brain tumours. The centre works at every stage of cancer treatment, from diagnosis to survivorship.
The money raised will support a diverse range of research projects from new imaging techniques to better drug delivery. The centre also runs clinical trials and leads awareness campaigns and support initiatives.
Professor Richard Grundy from the Children’s Brain Tumour Research Centre said: "Ellie and her family have shown such strength during Ellie’s treatment, and it is so impressive to see Emma apply this same approach to overcoming her fear taking on this challenge to benefit CBTRC. Research holds the key to improving diagnosis, treatment and improving long-term outcomes for children with brain tumours. We are incredibly grateful to all of those who are taking part in the skydive and the immense efforts you are going to, to raise funds."
People can support Emma in her fundraising by donating via her JustGiving page or through the group’s main JustGiving page