A four-year-old girl has died after receiving a diagnosis of a terminal brain tumour which couldn’t be removed. Aria Hodgkiss, from Wrexham, was heartbreakingly diagnosed with diffuse intrinsic pontine glioma on her third birthday in May 2021. There remains no known cure for the condition.
Announcing the news of Aria’s passing on social media on Thursday her family wrote: “Our brave warrior, our baby girl Aria passed away peacefully surrounded by her family at 12.30am. “We are absolutely devastated and we have no idea how we will carry on each day. But we promise you that we will carry on for you. We love you so so much Aria.”
After Aria’s symptoms first appeared in September 2020 her parents Melanie and Carl started to notice that she was losing her balance and her mobility was becoming increasingly impaired. Recalling the lead-up to Aria's diagnosis in an interview with WalesOnline in August last year Melanie explained that in September 2020 her daughter had started to become "really clumsy" and kept "falling over her own feet".
At the time Aria's paediatrician put her clumsiness down her being born prematurely or possible cerebral palsy. In the meantime he referred her to physiotherapy. But by November 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. Aria 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. A scan on April 23 revealed a tumour on Aria's brainstem and a large amount of fluid. She was transferred to Alder Hey Children's Hospital in Liverpool. 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 and 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. Melanie and Carl fought for Aria to be given ONC201 medication, not available on the NHS, for a few months which they said seemed to be working. Various treatments were tried through a GoFundMe page set up by Aria's former childminder Vicky Roberts, which raised thousands.
Aria’s family said their focus was always on prolonging Aria’s life for as long as they could. Through their Facebook page Aria Vs DIPG Melanie has been able to make contact with other families who have experience with DIPG – something she was initially reluctant to do but is now thankful for.
Melanie said: “At first I didn't want to be in contact with anyone else who had experience with DIPG. I just wanted to block it all out. But now, having spoken to other parents, I feel like I've got an extra support network.”
After posting the news of Aria’s passing on Twitter well wishes flooded in for her family. One said: "So sorry for your loss . Thoughts with you all" and another said: "Absolutely heartbreaking. All my love and strength I’m sending to you all."
Only 40 children in the UK are diagnosed with the condition each year. The average life expectancy is just nine months after diagnosis with only 1% of children surviving five years after diagnosis.
Speaking last year about the impact Aria's diagnosis had had on the family Melanie said: "It's turned our life upside-down. What was important before is not important now. You live for each day. So instead of before when we were worried about what was going to happen next week you now think about today. And as long as Aria gets up today and she's okay then we'll carry on."
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