A British toddler is affected by a rare sort of brain tumor that doctors say is the only case of its kind in Europe.
Orla Tuckwell was just 21 months old when she was reportedly diagnosed with medulloblastoma in September. The young girl had been vomiting violently in the weeks leading as much as her diagnosis, but doctors initially attributed it to digestive problems.
It wasn’t until her heart rate and blood pressure modified drastically that clinicians realized there was something more serious lurking beneath the surface. The biopsy results appeared to uncover the perpetrator: a brain tumor.
“It hurts to see Orla so sick, fighting over and yet again,” says her mother, Naomi, 37, told SWNS.
“Having to helplessly watch your child agonize and administer extra morphine to stop him screaming or administer toxic chemicals will haunt me and [Orla’s father] Adam for the remainder of his life,” she continued.
![Orla cuddles a teddy bear in a hospital bed](https://nypost.com/wp-content/uploads/sites/2/2023/03/NYPICHPDPICT000007955300.jpg)
![Orla sleeps in the hospital](https://nypost.com/wp-content/uploads/sites/2/2023/03/NYPICHPDPICT000007955303.jpg?w=1024)
Medulloblastoma is a childhood brain tumor which forms in the cerebellum – the a part of the brain that controls balance and coordination – situated at the base of the skull.
“It’s way an excessive amount of for a 2-year-old. Orla needs to be playing and learning, not cryopreserving her ovaries because all the chemo makes her infertile,” Naomi said.
“She’s such a brave little fighter, but we’re still fearful about the future.”
Orla’s parents, from Hertfordshire, England, have two other daughters – Ava, 8, and Poppy, 6 – who’ve spent the past six months watching their younger sister fight for her life in hospital.
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Orli had the tumor removed successfully at Great Ormond Street Hospital and the biopsy yielded surprising results.
Based on her family, Orla has a rare mutant variant called MYCN amplification, which causes cancer more more likely to spread and fewer likely to reply to treatment.
Typically, MYCN amplification – when 10 or more copies of the gene are present – in a tumor corresponds to a TP53 mutation, but the mutation apparently doesn’t occur in Orla.
Such a mutation has a tendency put people at greater risk cancer development.
“I asked the specialist: ‘What does that even mean?’ But they didn’t know. Our whole world collapsed around us,” recalls Naomi, saying that experts couldn’t find “a single case” much like Orla’s, making her diagnosis rare in Europe.
After 4 surgeries and exhausting chemotherapy, a young girl appears to be running out of treatment options. She appears to be too young for radiotherapy – like her parents has collected nearly 40,000 from Thursday via GoFundMe for alternative treatment options.
![Orla smiles before her cancer diagnosis](https://nypost.com/wp-content/uploads/sites/2/2023/03/NYPICHPDPICT000007955302.jpg?w=768)
![Naomi and Orla hug](https://nypost.com/wp-content/uploads/sites/2/2023/03/NYPICHPDPICT000007955296.jpg?w=768)
The family says that if Orla doesn’t require additional treatment, the money will probably be used to rehabilitate her after the lack of speech, hearing and mobility.
“Doctors do not know in the event that they’re overdoing it, or treating her with the current high-dose chemotherapy protocol, or if she’s going to relapse,” Naomi explained.
“That might be catastrophic and never to be thought of because after this round of chemotherapy, she wouldn’t be eligible for radiotherapy until the age of three.”
The family promised to donate any surplus funds to research into Orla’s rare condition.
“It’s shocking how little is thought about this disease and the way underfunded research into brain tumors is,” Naomi said.
![Orla is sitting on a hospital bed wearing pink pajamas and looking at the camera](https://nypost.com/wp-content/uploads/sites/2/2023/03/NYPICHPDPICT000007955187.jpg?w=768)
are an estimated 3,840 people in the US live with the same sort of ultra-rare cancer, based on the National Cancer Institute, which reports that brain cancer is leading explanation for death from infantile disease amongst children in the US.
Based on the government agency, Medulloblastoma affects coordination, balance, walking, and motor skills.
Sometimes a tumor can obstruct the central nervous system and cause pressure in the skull, which could cause headaches, nausea, vomiting, vision problems, drowsiness, confusion, and even seizures.
If it progresses and spreads to the spine, there could also be weakness in the limbs, back pain, and changes in bathroom habits.