Hollywood stars Ryan Reynolds and Rob McElhenney have donated £10,000 each to support a young girl from Wrexham with terminal brain cancer. Aria Hodgkiss was diagnosed with diffuse intrinsic pontine glioma (DIPG), a very aggressive form of the disease, on her third birthday in May 2021.
As the tumour is located in the the four-year-old's brain stem, which is used to regulate balance, breathing, and heart rate, it cannot be removed. So her heartbroken family have tried to raise as much money as possible for a pioneering drug which has shown in trials to kill cancer cells with a specific genetic mutation in the tumour.
At present the only treatment available to her on the NHS is radiotherapy which will prolong her life by around six months. The typical life expectancy from diagnosis is between nine months and a year.
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To help Aria's cause Wrexham AFC co-owners Ryan Reynolds and Rob McElhenney have each pledged £10,000 on the 'Aria Vs DIPG' GoFundMe page. This marks another charitable act by the duo who also donated £10,000 to the Stillbirth & Neonatal Death Society earlier this year after Wrexham player Jordan Davies and his partner Kelsey Edwards child was stillborn.
Aria's family said: "We just wanted to say a huge thank-you to them both. It takes the pressure off a little bit with the fundraising. It gives us the peace of mind that we can continue with Aria's medication. The support we have had has been amazing. Diolch o galon"
Hundreds follow Aria and her family on Facebook for regular updates regarding her progress as well as the larger fundraising mission they face. They set about fundraising almost immediately after finding out about the pioneering cancer drug and have to date raised more than £60,000.
On the GoFundMe page the family said that Aria has recently finished her latest course of radiotherapy but is still unable to use the left side of her body. They say they can "only hope" that this movement comes back. "We can only pray and hope that she will be okay," they said.
Recalling the lead-up to Aria's diagnosis her mum Melanie, 41, from Rhostyllen, explained that in September 2020 her daughter had started to become "really clumsy" and kept "falling over her own feet". At the time the paediatrician put her clumsiness down her being born prematurely or possible cerebral palsy. In the meantime he referred her to physiotherapy.
But by November 2020 Melanie noticed Aria's walking had deteriorated and she was starting to crawl everywhere. By the end of December 2020 she had stopped walking completely. A few months later Aria's eyes started shaking from side to side and her left eye had turned inwards to her nose. She was referred to the hospital's ophthalmology department but tests didn't find anything.
However Melanie's gut feeling prompted her to raise her concerns with the physiotherapist, who referred them back to the paediatrician. "I said I'm really, really concerned now – something's really not right. She needs an MRI," said Melanie in August 2021.
A scan on April 23, 2021, revealed a tumour on Aria's brain stem and a very large amount of fluid. She was transferred to Alder Hey Children's Hospital in Liverpool. "The doctors at Alder Hey didn't know how she was still so active. They said that she shouldn't be this active with the amount of fluid that's in her brain," Melanie said.
"They put a shunt in Aria's brain two days later to drain the fluid. That goes in from her brain to her stomach constantly – it's there all the time to stop any build-up. And then on April 28 they did a biopsy."
The biopsy results a week later confirmed that Aria had DIPG. Doctors said she could receive radiotherapy but advised the family to "make memories" because she would pass away between nine to 12 months later. Following the devastating diagnosis Melanie said she was "on Google day and night" and found hope reading about the experiences of other children online.
"I wouldn't stop until Aria was on everything possible so that she could go on," said Melanie. "We were devastated. I was having days where I was thinking the worst. You find forums on Facebook everywhere of families going through the same thing and that's how I came across different things and different people. There are cases out there where the kids are still going two, three, four, five years later."
Over the past year the family have had to pay thousands of pounds a month to get Aria's cancer drug privately, known as ONC201. And in the last 10 weeks she has also taken ONC206 which is understood to be 10 times more powerful than ONC201. However the efficacy of this medication for DIPG has not yet been clinically proven. "It was invented for adults with epilepsy and it got discarded because it costs too much to make," explained Melanie.
She added: "It's a drug that stops it from growing. DIPG is like an octopus. It sort of grows legs and arms – it grows into everything. It's not a hard mass – it's like jelly. That's why it's impossible to get rid of." You can donate to Aria's GoFundMe campaign by going here.
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