Parents share heartbreaking pictures of their little girl and medics ‘don’t know’ how to treat child’s rare cancer
THE family of a two-year-old girl with a rare cancer have shared heartbreaking images of their child after doctors said they ‘don’t know’ how to treat her.
Little Orla Tuckwell was just 20-months-old when she was diagnosed with a medulloblastoma in September 2022.
It’s the most common malignant or high-grade paediatric brain tumour, but Orla has an incredibly rare mutation.
Because of this, her mum Naomi and dad Adam, have been told by specialists that they are unsure how best to treat her illness as they cannot find another case anywhere in Europe.
Since her diagnosis, the youngster has endured four operations and continues to have gruelling chemotherapy.
Naomi and Adam have been told that 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 her parents and siblings, Ava, eight, and Poppy, six, has spent most of the past six months in hospital.
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.”
Weeks before medics discovered the tumour, Orla was violently vomiting.
Initially, experts at the Princess Alexandra Hospital in Harlow thought she had a gut problem.
But when the little one’s heart rate and blood pressure changed, medics ordered a CT scan.
It was then they discovered the tumour and Orla was take to Great Ormond Street Hospital in London (GOSH) to be operated on.
The tumour was successfully removed, but in October 2022, results from a biopsy showed that Orla had a MYCN amplification in the tumour but didn’t have the TP53 mutation; normally they are seen together.
Naomi said: “I asked the specialist ‘what does that even mean?’ But they didn’t know. 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.”
What is medulloblastoma and what are the symptoms?
Medulloblastoma is the most common malignant or high-grade paediatric brain tumour, Brain Tumour Research states.
At least 75 per cent of medulloblastomas occur in the cerebellum at the back and base of the brain, guidance states.
It’s usually diagnoses as grade 3 or 4 and is more common in girls than boys and is rare in adults.
Experts state: “It originates in embryonic (foetal) tissue hence is classified as an embryonal tumour, and is typically discovered during the first five years of life.
“Survival rates in children with medulloblastoma depend on the patient’s age and if the tumour has spread.”
What are the symptoms?
Symptoms resulting from medulloblastoma growth can include:
- Problems with walking
- Increased stumbling and falling
- General co-ordination issues, with increasing clumsiness for example
Now the family is crowdfunding in order to raise enough money to get Orla the treatment she needs abroad.
So far they have raised close to £30,000 of their £50,000 goal, with costs also going towards rehabilitation needed due to the severe side effects of Orla’s treatment, including some loss of speech and hearing as well as reduced mobility.
Mum Naomi is sharing the family’s story as part of Brain Tumour Awareness Month.
And today, a parliamentary debate will take place into the current lack of funding into research for brain tumours.
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.”
Dr Karen Noble, Director of Policy, Research and Innovation at Brain Tumour Research, said: “We are so sorry to hear about Orla’s devastating plight. What a brave little girl she is, in such a desperate situation.
“Despite the rarity of her tumour, her story is not unique. Brain tumours kill more children than leukaemia, yet historically just 1 per cent of the national spend on cancer research has been allocated to this devastating disease.
“There have been no new treatments developed and approved for use on brain tumours since 1999, and brain tumour patients deserve better.
“This is why many people feel they are forced to raise tens, even hundreds of thousands, of pounds to try treatments or trials privately or abroad.
“Further research to find a cure needs to be a priority for the Government and cancer charities.”