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 died of a tumor so rare that it was the only documented case in Europe.

Her heartbroken family are now calling for more research into the disease, saying it is “shocking” how little is known about it.

Orla Tuckwell before her diagnosis in September 2022Photo credit: SWNS

Orla was just 20 months old when she was diagnosed with medulloblastoma, which had a mutation so rare that there were other cases like hers in EuropePhoto credit: SWNS

Orla underwent several rounds of treatment and was discharged in April this year, but suffered a relapse in JulyPhoto credit: SWNS

The little toddler died on August 12th - here she is pictured with mom Naomi two weeks earlier — The little toddler died on August 12th – here she is pictured with mom Naomi two weeks earlierPhoto credit: SWNS

Orla Tuckwell was just 20 months old when she was diagnosed with an incredibly rare form of brain cancer in September 2022.

Medulloblastoma had a rare mutation and specialists could not find another case like this.

Orla, from Broxbourne, Hertfordshire, underwent months of grueling treatments until all options were exhausted.

The child died on August 12 – just four months before his third birthday – shocking his family.

Now her grieving parents Naomi and Adam are campaigning for the government to provide more funding for brain tumor research so that no other family has to suffer the same heartache.

Naomi, 38, said: “We will always love Orla, always talk about her and keep her memory alive.”

“She was so strong and brave – such an inspiration to everyone who knew her.”

“We don’t want this to be the end, we want to continue to tell her story and will create a legacy for her to try and drive more research and help other families with this situation in the future.”

Last September, Orla was diagnosed with medulloblastoma after weeks of vomiting – the second most common brain tumor in children, according to Cancer Research UK.

But biopsy results showed it was an incredibly rare mutation – and specialists were unable to find another case on the continent.

The little one was too young for radiation therapy, but had to endure four surgeries before induction chemotherapy, followed by grueling high-dose chemotherapy in February 2023.

However, during this treatment she suffered a severe bacterial infection that led to sepsis.

Orla was taken to intensive care and required emergency cannulas – tubes – inserted into her armpits to administer medication as her limbs were already beginning to fail.

She then went into cardiac arrest and her heart stopped for up to a minute, to the dismay of her doting family.

Doctors managed to bring her back, and after removing the line where the source of infection was located, the drug began to work immediately.

Her condition improved dramatically, she was able to stop treatment and was discharged in April.

The family, including Orla’s sisters – Ava, nine, Poppy, seven – and her grandparents even traveled to Center Parcs for a special holiday in June.

But in July, just as Orla was looking forward to starting preschool in September, she started showing signs of a possible relapse.

She became unbalanced and coughed up yellow bile into her bed one morning.

Naomi added: “Adam and I looked at each other and immediately knew something was wrong – it was exactly how it all started in the first place.”

Signs of medulloblastoma

According to Cancer Research UK, medulloblastoma is the second most common brain tumor in children. 52 children are diagnosed in the UK every year.

Most commonly diagnosed in children between the ages of three and eight, it is likely to grow quickly and can spread to other areas of the brain and spinal cord.

Cancer symptoms may be similar to other non-serious childhood diseases and include:

Headache in the morning
Nausea or Nausea – Illness often makes the headache feel better
Double vision
You find it difficult to sit or stand without support – your child may often fall backwards
If you are more restless or irritable, it may take longer than usual for your young child to adjust
Loss of appetite
Behavioral changes – they may interact less with you or their siblings

Source: CRUK

She was taken to her team at Great Ormond Street Hospital, where an MRI scan revealed she had suffered a relapse.

Her original tumor was in a solid lump on the right side, but it had metastasized to the left side and invaded the brain lining.

There was also another tumor spot near her pituitary gland and two on her spine.

The family was told it was much worse than doctors first thought – and that there was nothing they could do to repair 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 chose a round of oral chemotherapy with minimal side effects to keep her well for as long as possible.

The family took Orla home with anti-sickness and pain medication and enjoyed two weeks together; with lots of time, a photo shoot, casts of her feet and hands and visits from Disney princesses.

They also hosted a party with family and friends so everyone could celebrate Orla.

A week later, her health deteriorated and the family moved to Haven House Hospice on August 8th.

Orla died a few days later, on August 12th, surrounded by her parents and sisters.

This month, during Childhood Cancer Awareness Month, Naomi and her family are working with Brain Tumor Research to raise funds for research.

Naomi said: “If more research was done into brain tumors and more was known about these mutations, Orla would have had more time, cheaper treatment options or even the chance of a fulfilling life.”

“It is shocking how little is known about this disease and how underfunded brain tumor research is.”

Brain Tumor Research’s campaign is calling on the Government to provide £110m of current and new funding to stimulate an increase in national investment in brain tumor research to £35m a year by 2028.

Charlie Allsebrook, Community Development Manager at Brain Tumor Research, said: “We are devastated to learn of Orla’s death. She was such a brave little girl.”

“Despite the rarity of Orla’s tumor, her story is unfortunately not unique.

“Brain tumors kill more children than leukemia, yet historically only one percent of national cancer research spending has been devoted to this devastating disease.”

“Five years after the government announced £40m for brain tumor research, less than £11m has been spent.

“If everyone can just take a few minutes to sign and share, we will get there soon the 100“We need ,000 signatures and help find a cure that will bring hope to families whose loved ones are affected by brain cancer.”

The petition deadline ends at the end of October 2023.