Our courageous baby girl’s death must not be in vain – we’d never heard of the disease that stole her
LITTLE Orla Tuckwell was just a few months shy of her third birthday when she passed away from a tumour so rare, hers was the only documented case in Europe.
Her heartbroken family is now calling for more research into the condition, saying it’s ‘shocking’ how little is known about it.
Orla Tuckwell was just 20 months old when she was diagnosed with an incredibly rare form of brain tumour in September 2022.
The medulloblastoma had rare mutation and specialists couldn’t find another case like it.
Orla, from Broxbourne, Hertfordshire, had months of gruelling treatments until all options had been exhausted.
The tot passed away on August 12 – just four months before her third birthday – devastating her family.
Now, her grieving parents, Naomi and Adam are campaigning for the government to allocate more funding for brain tumour research – so no other family has to experience the same heartache.
Naomi, 38, said: “We will always love Orla, and will always talk about her and keep her memory alive.
“She was so strong and courageous – such an inspiration to everybody who knew her.
“We don’t want this to be the end, we want to keep telling her story and will create a legacy for her, to try to push for more research and help other families in the future going through this.”
Last September, after Orla had been vomiting for weeks, she was diagnosed with a medulloblastoma – the second most common brain tumour affecting children, according to Cancer Research UK.
But biopsy results revealed it had an incredibly rare mutation – and specialists couldn’t find another case on the continent.
The tot was too young for radiotherapy, but endured four operations before induction chemotherapy, followed by gruelling high-dose chemotherapy in February 2023.
However, she suffered a severe bacterial line infection during that treatment which led to sepsis.
Orla was taken into intensive care and needed emergency cannulas – tubes – put into her armpits to administer medication, because her limbs had already started to shut down.
She then went into cardiac arrest and her heart stopped for up to a minute, to the horror of her doting family.
Medics did manage to bring her back, and after removing the line where the source of infection was, the medication immediately began to take effect.
Her condition improved drastically, and she was able to stop treatment and be discharged in April.
The family, including Orla’s sisters – Ava, nine, Poppy, seven – and their grandparents even went to Center Parcs in June for a special break.
But in July, just when Orla was looking forward to starting pre-school in September, she started to show signs of possible relapse.
She became off-balance, and one morning coughed up yellow bile in her bed.
Naomi added: “Adam and I looked at each other and instantly knew something was wrong – it was just like how this all started initially.”
Signs of medulloblastoma
Medulloblastoma is the second most common brain tumour in children, according to Cancer Research UK, with 52 children diagnosed in the UK yearly.
It’s most commonly diagnosed in children between the ages of three and eight, and likely to grow quickly and can spread to other areas of the brain and spinal cord.
Symptoms of the cancer can be similar to other non-serious childhood illnesses and include:
- headaches in the morning
- feeling or being sick – being sick often makes the headaches feel better
- double vision
- finding it hard to sit or stand unsupported – your child might often fall backwards
- being more fractious or irritable – it might be taking longer than usual to get your young child to settle
- loss of appetite
- behaviour changes – they might be interacting with you or their siblings less
Source: CRUK
She was rushed to her team at Great Ormond Street Hospital, where an MRI scan revealed she had relapsed.
Her original tumour was on the right-hand side in a solid lump, but it had metastasised in the left side and penetrated the lining of the brain.
There was also another tumour spot near her pituitary gland, and two on her spine.
The family were told it was much worse than doctors first thought – and there was nothing they could do to operate on it.
Naomi said: “It was the moment we knew nothing else would cure Orla, and it was more about how much time we had with her.”
The family opted for a round of oral chemotherapy with minimal side effects, so she could feel well for as long as possible.
The family took Orla home with anti-sickness, pain relief and enjoyed two weeks together; with lots of quality time, a photoshoot, castings of her feet and hands and Disney princesses visiting.
They also had a party with family and friends so everybody could celebrate Orla.
A week later her health deteriorated, and the family moved to Haven House Hospice on August 8.
Orla passed away a few days later, on 12 August, surrounded by her parents and sisters.
This month, during Childhood Cancer Awareness Month, Naomi and the family are campaigning with Brain Tumour Research for more funding into research.
Naomi said: “If more research was done for brain tumours, and more was known about these mutations, Orla could have had more time, kinder treatment options or even the chance to live a full life.
“It’s shocking how little is known about this disease, and how under-funded research into brain tumours is.”
Brain Tumour Research’s campaign calls on the government to ring-fence £110million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
Charlie Allsebrook, community development manager at Brain Tumour Research, said: “We are devastated to hear about Orla’s passing. She was such a brave little girl.
“Sadly, despite the rarity of Orla’s tumour, her story is not unique.
“Brain tumours kill more children than leukaemia, yet historically just one per cent of the national spend on cancer research has been allocated to this devastating disease.
“Five years after the Government announced £40million for brain cancer research, less than £11 million has been spent.
“If everyone can spare just a few minutes to sign and share, we will soon hit the 100,000 signatures we need and help find a cure, bringing hope to families whose loved ones have been affected by brain tumours.”
The petition closes at the end of October 2023.