Family’s race against time to save their little girl
TREATMENT
THE family of a toddler diagnosed with a brain tumour so big it filled a fifth of her skull face a race against time to fund life-saving treatment.
Bodie McNulty, two, was discovered to have a cancerous ependymoma a few days after Christmas in 2016 and had her first of four operations on New Year’s Eve.
Her parents Kevin McNulty and Lauren Thornton from Milnrow, Rochdale, have been told by doctors that if untreated, the condition would be fatal.
Bodie had been set for proton beam therapy to shrink the tumour. But two weeks ago, a scan showed a second, previously unnoticed, part of it in her brain stem.
This means there is too much of the tumour for Bodie to qualify for free NHS treatment. The family now needs to raise £175,000 in just four weeks.
If left untreated, the ependymoma has the potential to grow and become too large for her to be accepted as a patient anywhere.
Kevin, 24 and a tattoo artist, said: “It was heartbreaking when we were told that she had a brain tumour big enough to occupy one fifth of her skull.
“We had done a lot of research so we thought it would be something along those lines, but even so it was devastating.
“I was objective about what we needed to do almost immediately but I’ll never forget that moment.
“Since then it has been horrible. We do nothing but think about it.”
Operations and chemotherapy have removed much of the tumour but some of it, including the recently discovered part, is in the brain stem so cannot be touched. Proton beam therapy itself is a risk as it can damage brain tissue, but the family sees it as less of a risk than the conventional alternative of photon radiotherapy. This is available on the NHS, but is less targeted so increases the likelihood of long-term side effects such as brain damage. Bodie was diagnosed at 10 months following four weeks of symptoms including sickness and constant tiredness. By the end of that period, she had lost the ability to crawl and hold up her head. Kevin and Lauren, 22, made six trips to hospitals and GPs before Bodie was given a scan and correctly diagnosed. “At first we weren’t taken seriously and were treated like hypochondriacs so I would tell parents not to give up and if you think there’s something wrong, keep asking people’s opinions,” said Kevin. “Now we have an agonising choice of proton beam therapy, which has unknown risks, or photon radiotherapy which we believe would cause more long-term damage. It’s like playing Russian roulette with our daughter.” Kevin hopes Bodie can undergo treatment overseas, Florida being one option, for six to eight weeks. Anyone wishing to donate can visit www.justgiving.com/ crowdfunding/protonforbodie. Kevin McNulty