Family’s race to raise money to give their daughter a chance of life

But then in April this year they took her to an eye appointment, and their lives were turned upside down.

She was taken to her opticians on April 23, after her parents noticed a squint in her eye leading to an urgent eye clinic appointment the next day.

Despite a CT scan clearing her of anything life-threatening, Erin developed slurred speech and weakness in her right arm and leg over a period of just a week.

Nina, who is a nurse, and Chris rushed her to the hospital, where she had an MRI scan revealing a lesion on the pons-part of the brain stem. Her parents were devastated to learn that she has diffuse intrinsic pontine glioma (DIPG), a rare brain tumour that affects only 20 to 30 children in the UK per year.

The tumour is incurable and with a life expectancy of 12 to 18 months, Erin’s parents are trying to raise £100,000 for them to travel to Zurich as surgery is not possible in the UK. They have raised more than £73,000 in just eight weeks.

They now want to tick off a list of activities for their daughter to enjoy, including travelling somewhere abroad.

“We were given [Erin’s] diagnosis and prognosis on the same day; it was our worst nightmare,” Nina says. “Being a nurse, I had delivered the bad news speech many times myself and when we were taken into a private room with loads of staff, I knew what was about to happen.

“My husband asked the doctor, ‘So, are you telling us we’re going to lose our baby girl?’ and the doctor replied, ‘Yes. I’m sorry.’

“We were told the tumour was in the pons area of the brain stem and that it was inoperable. With a poor prognosis of 12 to 18 months, we were told to go and make memories with our daughter and prepare to lose her.

“My husband and I refused to accept this. We contacted multiple charities, including Abbie’s Army, who have been a big help, and doctors across the world in the US, Zurich and Germany, looking for alternative treatments to save our daughter. We’ve also liaised with other families facing the same terror as us.”

In May, Erin began her radiotherapy and chemotherapy treatments, which she underwent for six weeks in each case.

Tumour-removal surgery is not possible or advisable for DIPG, as these tumours grow rapidly throughout the brain stem, so Nina and Chris want to venture abroad to find alternative treatments to help alleviate Erin’s symptoms.

“We’ve chosen to give Erin an expensive experimental drug called ONC201 from Germany, which she started four weeks ago,” Nina says.

“The hope is that this will shrink the tumour, whilst we continue to look for other alternative treatments, in case this is not successful. This drug has had some success in the US, and we are praying for a miracle.”

Erin’s family have been honest with their eldest daughter, Freya, about Erin’s illness and Nina says she has been a very supportive sister.

“We have all been honest with Freya from the start about the diagnosis and prognosis and she has struggled at times.

“She trains [as a gymnast] five days a week since the gym reopened after lockdown and this has helped give Freya something to focus on.

“All of her friends and coaches there have been an excellent support for her and she has been really supportive to her sister.

“Erin is coping really well; considering [everything she’s been going through] she has been an extremely independent child, who is very bright.

“She has already been through more than any child should have to, but she is strong and a fighter.”

Despite her ordeal, Erin is known by her family to be a happy girl, full of life. She loves gymnastics and swimming and she trains at Doncaster Gymnastics Academy with her big sister, Freya, 10.

“Erin is a feisty child, full of energy,” says Nina. “She loves gymnastics and swimming and her sister is a keen gymnast too.

“It would mean the world to us if we could hit the £100,000 target and would mean that we don’t have to worry about how to fund Erin’s treatment.”

Nina says they have been overwhelmed with the support and generosity they have already received – with several special events organised by friends and family.

“We’ve had a swim at Manvers Lake, a safari hunt in the village, raffles, charity football games, a sponsored bike ride, and a sponsored three-peak walk, which my husband took part in on August 15.

“We have raised an excellent amount already and we want to thank everyone who has supported and donated for Erin.

“We especially want to thank [our friend] Joe Tillotson who has been the organiser and has gone above and beyond to support us. He deserves an award for all of his hard work, he’s truly a selfless person.

“We would love to take Erin abroad again, which she loved. She’s told us several times that she wants to go on a plane when she’s better. We just plan to help her get her better as quick as we can.

“She keeps asking when she will be better, we are all trying to remain positive for her, praying that her symptoms continue to get better and things are easier for her.”

You can donate to the Go Fund Me page to help the family here. https://www.gofundme.com/f/PleasehelpErinMoran

Rare but devastating tumours

DIPG (diffuse intrinsic pontine glioma) are highly aggressive brain tumours which are difficult to treat. They come from the brain’s glial tissue, which is made up of cells that help support and protect the brain’s neurons.

The tumours are found in an area of the brain stem which controls the breathing, blood pressure and heart rate of the body.

Diffuse intrinsic pontine gliomas make up for 10 per cent of all childhood central nervous system tumours and approximately 20 to 30 children are diagnosed with DIPG a year in the UK.

Research shows that 90 per cent of children die within 18 months of diagnosis and survival beyond two years is very

rare.

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James Mitchinson