At the age of 20 months, Orla Tuckwell, from Broxbourne in Hertfordshire (United Kingdom), is diagnosed with a rare brain tumor, of which no other case is recorded in Europe. This last, called medulloblastomawas diagnosed on September 22, 2022.
Cancer: doctors first think of a digestive problem
The disease revealed itself when Orla began to experience regular and violent vomiting. These symptoms, which lasted for several weeks, are initially attributed to digestive problems.
It’s only following a change in heart rhythm as well as girl’s blood pressurethat doctors detect a tumour. However, in October 2022, the results of the biopsy reveal that the tumor is particularly unusual. Naomi, 37, mother of Orla, confided in The Independent : “Our whole world has collapsed around us. Orla’s consultant was working with other specialists to try to find out if anyone else in Europe had this tumour. They mightn’t find a single caseOrla was then taken to Great Ormond Street Hospital (GOSH) for surgery. The tumor is successfully removed.
Chemotherapy is his only option at the moment.
Orla has already undergone four operations and continues to undergo chemotherapy. Naomi explains: “It’s heartbreaking to see Orla so ill, fighting once more and once more. Having to helplessly watch our child in agony and receive extra morphine to keep him from screamingor being administered toxic chemicals, will haunt me and Adam for the rest of our lives“.
She added: “That’s way too much for a two-year-old girl. She’s such a fighter and brave little girl, but we are constantly worried regarding the future.” She and her husband hope that the chemotherapy will be effective, because following that, there will be no more treatment. Indeed, the other possibility is radiotherapybut this option is not accessible before the age of three.
Nevertheless, the results of chemotherapy remain unpredictable at this time. “Doctors don’t know whether they treat her too much or not enough with the current protocol high-dose chemotherapy, and if she is at risk of relapsing”, confides the mother. Thus, they must be ready for any eventuality.
“It is shocking to note that nothing is known regarding this disease”
To be ready to face all risks the parents are trying to raise fundsin case Orla might be eligible for private treatment in the UK, or overseas.
The amount raised might also help relieve some serious treatment-related side effects of Orla such that loss of speech et reduced mobility. “I wish we didn’t have to put that money together, it’s the last thing we want to think regarding when our little girl is so sick. I hope we won’t need it and it can be donated to fund research, but we have to be prepared,” says the girl’s mother.
Indeed, she concludes:It is shocking how little is known regarding this disease and how underfunded brain tumor research is.”
