Family Calls For Research Funding After Toddler Died Of Rare Condition

“It’s shocking how little is known about this disease, and how under-funded research into brain tumors is.” 

<p>Orla Tuckwell with mom Naomi.A family is calling for more research after their toddler daughter died of a tumor so rare it was the only case in Europe. PHOTO BY BRAIN TUMOUR RESEARCH/SWNS </p>

UMOURA family is calling for more research after their toddler daughter died of a tumor so rare it was the only case in Europe.

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

The medulloblastoma had a rare mutation and specialists couldn’t find another case like it.

Orla, from Broxbourne, UK, had months of grueling 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 UK government to allocate more funding for brain tumor 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.”

Orla with m0m Naomi, dad Adam, and older sisters Ava, eight, and six-year-old Poppy. PHOTO BY BRAIN TUMOUR RESEARCH/SWNS

Last September, after Orla had been vomiting for weeks, she was diagnosed with a medulloblastoma.

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 grueling 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 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 the infection was, the medication immediately began to take effect.

Her condition improved drastically, and she was discharged in April and rang the end of treatment bell.

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 preschool in September, she started to show signs of possible relapse.

She became off-balance, and one morning coughed up yellow bile in her bed.





Produced in association with SWNS Talker