Nearly £13,000 has been raised for a three-year-old girl from Wrexham who has been diagnosed with a rare form of brain cancer.
Melanie and Carl Hodgkiss were told that their daughter, Aria, had a diffuse intrinsic pontine glioma (DIPG) on her third birthday.
About 40 children are diagnosed with DIPG each year, but only 1% of them survive more than five years.
Most children with the tumor have about nine months to live.
The money was raised to pay for an experimental treatment to extend Aria’s life.
Aria Hodgkiss is the youngest of five children.
Melanie, 40, explained how Aria was born prematurely, but they didn’t notice anything was wrong until she suddenly stopped walking late last year.
Aria could no longer walk or stand on her own, and after seeing doctors and undergoing tests, her parents were finally given the heartbreaking diagnosis. Last month, Aria completed a three-week intensive course of radiation therapy, but her family is spending thousands of pounds on experimental treatment to give her the best chances. One of the studies, a drug called ONC201 that costs up to £1,000 a week, is the most promising and could add years to Aria’s life.
Aria is the youngest of five children, but despite more than a decade between the siblings and her illness, her mother described Aria as “the boss.” Melanie said: “She started walking when she was 23 months, so she was quite late, and then last September we noticed she was getting pretty clumsy.
“Then around late December last year, early January, she stopped walking altogether. She couldn’t walk alone anymore, she couldn’t stand alone, so she was crawling everywhere.”
Doctors initially attributed Aria’s symptoms to being born prematurely.
Melanie explained how doctors initially attributed her symptoms to being born prematurely.
She was later seen by a physical therapist and then booked for an MRI scan. “At the time, he thought it was cerebral palsy. But three weeks later she got the MRI and they discovered she had a mass in the percussion area of the brain,” Melanie continued.
“She also had a large fluid buildup in her brain.”
The family was taken straight to Alder Hey Hospital in Liverpool, where Aria was examined by an oncologist, who confirmed she needed immediate surgery to drain the fluid.
Aria and her family were rushed to Alder Hey Children’s Hospital.
Melanie added: “The doctors said this [tumour] probably growing since September last year.
“We’ve looked at it ourselves and there are kids who are on different drugs — a lot of kids die from this disease because of where it’s in the brain, it attaches to everything, the heart, the lungs, everything.
“That’s why we started the fundraiser. Right now she’s on a drug called TBL12, which is like a jelly mold that we put in her juice, and it’s made from a sea cucumber from Australia that’s meant to help.” is on THC for which we had to pay privately, and we just received the ONC201 from Germany. “There are good stats with all of these, so we’re combining them all to give her the best chances we can, otherwise she’s got, has nine to 12 months to live.” Aria is fighting it. She’s trying to walk again, and not because we push her because she wants to do it herself.
In addition to the cost from the ONC, Melanie explained that the THC is £150 a bottle, plus consultation and prescription costs, and said they have just paid £600 to speak to a doctor in Germany for 40 minutes. “We would do anything for her, and the people are so nice and so wonderful to raise money for her. I am so grateful to everyone. A GoFundMe page and a JustGiving page have been set up by family and friends to raise money for her. to support the family and help with treatment costs.