Bodie McNulty, who is now two years old, was diagnosed with a brain tumour at the age of 10 months, just a few days after Christmas 2016.
Mum Laura Thornton, 22, had taken Bodie six times to their local A&E department and to see GP within a four week period leading up to the diagnosis. Bodie started with symptoms of sickness and constant tiredness which rapidly progressed into her losing the ability to crawl, sit up or even support her own head.
Lauren explained what happened leading up to her daughter’s devastating diagnosis. She said: “The sixth time we arrived at our local A&E department a doctor checked the reflexes in her legs and suggested we get an ultrasound of her brain.
“This revealed ‘an abnormality’ and we were transferred by ambulance to Royal Manchester Children’s Hospital, who then rushed her for an MRI scan and told us the heart-breaking news the next morning that she had a brain tumour big enough to occupy one fifth of her skull.”
Bodie’s first surgery was on New Year’s Eve that year which was to help relieve pressure in her skull. Four days later she had further brain surgery to remove as much of the tumour as possible.
Lauren said: “Sadly after 9 hours the Neurosurgeons could only manage to safely remove approximately half of the tumour. Two weeks after the surgery we were given Bodie’s official Cancer diagnosis – she has a Grade 3 Anaplastic Posterior Fossa Ependymoma.”
Bodie has since endured 12 months of chemotherapy, which Lauren said has worked far better than her consultant had previously thought it would. In February this year she also had two further surgeries.
Unfortunately, the small remainder of the tumour is inoperable as it is in her brain stem.
The family have been on track the last two months for Proton Beam Therapy, which they were confident would be funded by the NHS. But Bodie’s most recent MRI scan has shown a previously unnoticed mass within her brain stem. This new discovery is part of the original tumour and not new growth, which means her tumour now exceeds the size requirements for NHS funding by a few millimetres.
Lauren said: “We are now faced with the agonising choice of having to self fund life-saving Proton Beam Therapy which not currently available in the UK, or give her conventional Photon Radiotherapy which we believe would cause more long term damage to Bodie as it also hits healthy brain tissue. This can be avoided with targeted Proton Beam Therapy.
“We never expected it to be cancer. We knew something serious was wrong with our daughter and that we needed answers but we still had hope that it wouldn’t be something so awful. It was a big shock to hear and a lot to take in but once we had an answer we were relieved that they would be able to treat her and do something to make her get better.
“Bodie doesn’t understand the diagnosis at all, this is all she has known. She has spent more of her life in hospital than she has at home. She is developmentally delayed and still cannot walk or even stand unsupported, she can only say a few words but has good understanding when other people are talking to her.
“She has some hearing impairment due to the chemotherapy. For us we don’t have a normal family life, there are times when we are at hospital and times when we are at home, Bodie can’t go out and do any of the things that other children her age would. She has no immune system so has to be kept away from large numbers of people, even a cold could leave her hospitalised for days.”
In a big to get funding for Bodie’s Proton Beam Therapy, the family have set up a Just Giving Page.
So far, online, they gave raised £11,435. But the family have lots of fundraising events planned in person.
Lauren said: “We are so thankful that so many people have offered us their help, even if it’s just to spread the word if they can’t donate.”
To donate to Bodie’s cause, click here.
The symptoms of a brain tumour vary depending on the exact part of the brain affected.
According to the NHS, common symptoms include severe persistent headaches, seizures, persistent nausea, vomiting and drowsiness, and mental or behavioural changes, such as memory problems or changes in personality.
Progressive weakness or paralysis on one side of the body and visit or speech problems can also be indicators.