Community raises over €100k for ‘Hope For Evie’

By Hayden Moore

THE COMMUNITY has rallied behind the ‘Hope For Evie’ campaign to help raise funds for a little baby girl who has a rare genetic condition.

More than €100,000 has been raised to send her over to the US for specialist treatment.

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Evie with parents Emma and Keith

Recent fundraisers for little Evie, who is set to turn one on October 18, by children competing in the Hell and Back Junior competition, a head-shaving night and Crumlin Boxing Club – who raised €12,000 alone before Conor McGregor matched it – saw the family’s original goal of €60,000 “blown out of the water”.

Evie was diagnosed back in March of this year to be missing a large part of her X-chromosome and with a rare condition called microcephaly with pontine cerebellar hypoplasia, and a mutation in her CASK gene.

The condition stunts the development of Evie’s brain, and can cause a wide variety of problems that include a seizure disorder, developmental delays, intellectual disabilities and facial distortions.

Girls born with a mutation in their CASK gene, like Evie, are commonly non-verbal and can find it extremely difficult to walk, if at all.

With little knowledge of Evie’s condition in Ireland because of its rarity, her parents discovered a doctor in Virginia, in the US, that explores the role of the CASK gene in neurological disorders.

Through Dr Konark Mukherjee’s research, it has shown that with aggressive “burst” therapy, it can help significantly improve a patient’s development – leading to Emma Nolan and Keith Purdy, Evie’s parents, enrolling their daughter in the four-week programme.

Emma set up a GoFundMe page back in June with the aim of reaching their €60,000 goal to get Evie over to Virginia to receive the intensive therapy, and now this week they crossed the €100,000 mark.

Speaking to The Echo after crossing €100,000 raised in aid of her daughter, Aylesbury native and Bancroft resident Emma could not believe the support.

“It’s just absolutely mind-blowing, we set out to raise €60,000 and it was absolutely blown out of the water. We never expected that,” she exclaimed.

“We have something on every week – the whole community has come together and I don’t even have the words to describe how I’m feeling. I’m just waiting for reality to kick back in.

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Crumlin Boxing Club present €24,000 cheque to Evie’s parents

“[Evie] doesn’t realise yet just how much she is loved and how much people care about her.

“I just can’t get over it. It’s so emotional to see the little kids out doing Hell and Back and to see what an hour can do in Crumlin Boxing Club – the whole thing is just amazing.”

Crumlin Boxing Club held their ‘Let’s Sweat for Evie’ event a few weeks ago, which was a one-hour boxing course by qualified IABA coaches that had 40 people taking part at €20 a head.

Coach with the club, ‘Bra’ Brady, reached out to Conor McGregor’s representatives to obtain a set of signed gloves, which they raffled off before he asked if the MMA superstar would match what they raised.

“We got €500 for the gloves and being a bit cheeky I asked if he would match whatever

we made and he said it was no problem,” said Brady.

After bringing in all of their sponsorship cards, the club discovered that they had made €12,000 and with that, McGregor put up the other half to bring the total to €24,000.

There was a cheque presentation night held in the club with Emma, Keith and little Evie in attendance. Friends of the club, Herviz Boxing Club in Hungary, also recently raised €1,000 for the cause.

Meanwhile, 30 children from Tallaght, Clondalkin and Crumlin, aged between five and 12 years old put themselves through the tricky Hell and Back Junior challenge to raise funds for Evie.

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Children who took park in ‘To Hell and Back’ for Evie fundraiser

A friend of Evie’s mam Emma, Karen Doherty, was told by her daughter Kayleigh (10) that she wanted to do Hell and Back for Evie and from there it gathered momentum – with the group making over €2,000.

With a head-shaving night raising €4,000, and €73,500 on the GoFundMe page before the other latest events have been added to the total, that’s over €100,000 raised.

All of the money raised will go towards Evie’s therapy, with Emma, Keith and Evie jetting off stateside on February 13 to visit the Virginia Tech Carilion Research Institute Neuromotor Research Clinic for the four-week programme.

Donations can still be made at https://tinyurl.com/EvieVirginia.

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