Thousands raised for Wrexham girl, 3, with rare brain cancer that has 1% survival rate
Almost £13,000 has been raised for a three-year-old girl from Wrexham who has been diagnosed with a rare type of brain cancer.
Melanie and Carl Hodgkiss were told that their daughter, Aria, had a diffuse intrinsic pontine glioma (DIPG) on her third birthday.
Around 40 children each year are diagnosed with DIPG, but only 1% of those survive more than five years.
Most children with the tumour are given around nine months to live.
The money has been raised to pay for experimental treatment to help prolong Aria's life.
Melanie, 40, explained how Aria had been born prematurely, but they didn't noticed something was wrong until she suddenly stopped walking at the end of last year.
Aria could no longer walk or stand on her own, and after seeing doctors and undergoing tests, her parents finally received the heartbreaking diagnosis.Last month, Aria finished a three-week intensive course of radiotherapy, but her family are spending thousands of pounds on experimental treatment to give her the best chances.One of the trials, a drug called ONC201 that costs up to £1,000 a week, is the most promising and could add years onto Aria's life.
Aria is the youngest of five children, but despite more than a decade between the siblings and her illness, her mum described Aria as 'the boss'.Melanie said: "She started walking at 23 months, so she was quite late, and then in September of last year we noticed that she was getting quite clumsy.
"Then around the end of December last year, the start of January she stopped walking completely, she couldn't walk on her own, she couldn't stand on her own, so she was crawling everywhere."
Melanie explained how doctors initially attributed her symptoms to being born prematurely.
She was later seen by a physiotherapist, then booked in for an MRI scan."At that point, he believed it was cerebral palsy. But three weeks later she had the MRI and they discovered she had a mass in the pons area of the brain," Melanie continued.
"She also had a large build-up of fluid on her brain."
The family were taken straight to Alder Hey Hospital in Liverpool where Aria was reviewed by an oncologist, who confirmed she needed to have surgery immediately to drain the fluid.
Melanie added: "The doctors said that this [tumour] has likely been growing since September of last year.
"We've looked into it ourselves and there are children out there on different medications - a lot of children pass away with this disease because of where it is in the brain, it attaches to everything, the heart, the lungs, everything.
"This is why we've started the fundraisers. At the minute she is on a medication called TBL12 which is like a jelly form that we put in her juice and it's made from a sea cucumber from Australia which is meant to help."She is on THC which we have had to pay privately for, and we have just received the ONC201 from Germany."There are good statistics with all of these so we're combining them all to give her the best chances we can, otherwise all she has is nine to 12 months to live."Aria is fighting it. She is trying to walk again, and not because we're pushing her because she wants to do it herself.
In addition to the cost of the ONC, Melanie explained how the THC is £150 a bottle, plus consultation and prescription fees, and said they have just paid £600 to speak to a doctor in Germany for 40 minutes."We would do anything for her, and people have been so kind and so amazing raising funds for her. I am so grateful to every single person.A GoFundMe page and a JustGiving page have been set up by family and friends to help raise money to support the family and help with treatment costs.