A family is crowdfunding for a two-year-old who has a rare brain tumour - with no other registered cases in Europe.
Orla Tuckwell was regularly and violently vomiting for weeks and her symptoms were initially put down to digestive problems.
But in September 22 when she was just 20 months old she was diagnosed with a medulloblastoma.
Doctors thought she had a digestive problem but it was only after a change in her heart rate and blood pressure that the tumour was found.
Biopsy results revealed it had an incredibly rare mutation and since then the toddler has endured four operations and she continues to have gruelling chemotherapy.
Her parents were told once this course is over there will be no further treatment immediately available to Orla on the NHS as she is too young for radiotherapy.
Orla, who lives in Broxbourne, Hertfordshire, with mum Naomi, dad Adam, and older sisters Ava, eight, and six-year-old Poppy, has spent most of the past six months in hospital.
The family is now crowdfunding to raise money in the event that they need to access private treatment in the UK or abroad.
It will also help with rehabilitation needed due to the severe side effects of Orla’s treatment, including some loss of speech and hearing as well as reduced mobility.
Naomi, 37, said: “It’s heartbreaking to see Orla so ill, battling over and over again. Having to watch helplessly as your child is in agony and being given extra morphine to stop her screaming, or being administered toxic chemicals, will haunt me and Adam for the rest of our lives.
“It’s far too much for a two-year-old to cope with, Orla should be playing and learning not having ovarian cryopreservation because all the chemo is making her infertile. She is such a brave little fighter, but we’re constantly anxious about the future.”
She was taken to Great Ormond Street Hospital (GOSH) for to be operated on, and the tumour was successfully removed. However in October 2022 the molecular results from the biopsy revealed the tumour was particularly unusual.
Naomi said: “Our whole world came crashing down around us. Orla’s consultant was working with other specialists to try to find out if anybody else in Europe has this tumour. They couldn’t find a single case.“The doctors don’t know if they are over or under treating her with the current high dose chemotherapy protocol, or if she might relapse.
“That would be catastrophic and doesn’t bear thinking about, because after this round of chemotherapy she would not be eligible for radiotherapy until the age of three.”
Naomi added: “It’s shocking how little is known about this disease, and how under-funded research into brain tumours is.
“I wish we didn’t have to raise this money, it’s the last thing we want to be thinking about when our little girl is so ill. Hopefully we won’t need it and it can be donated to fund research for future patients, but we need to be prepared.”
You can donate to the fundraiser here: https://www.gofundme.com/f/orlas-fight-against-medulloblastoma
