‘We want to help other families too’

Despite coping with two cancer diagnoses, one family have raised more than £17,000 for charity, to make sure that families in the future are supported as well as they have been. We caught up with the Edgars – here is their story…

Last Christmas the Edgars were busy preparing for the festivities, just like any other family. It was a chance for some much needed normality after a difficult year.

The previous winter, mum Gemma was diagnosed with a brain tumour when her youngest son Noah was only eight weeks old. She had major surgery to remove as much of the tumour as possible, followed by six weeks of radiotherapy. Sadly Gemma’s tumour is incurable, but regular scans have shown no sign of regrowth.

Just as Gemma and her husband Rob, from Essex, were trying to settle back down into family life, Noah became unwell 10 days before Christmas. Gemma says: “We noticed that Noah’s eye was red and swollen and he wasn’t his usual self. It was initially thought to be conjunctivitis so he was given eye ointment, but after 48 hours Noah’s eye was completely swollen shut so we took him back to the doctors.”

Noah was diagnosed with orbital cellulitis and admitted to hospital for five days to have intravenous antibiotics. The family were delighted when he was discharged in time for Christmas, but by the New Year he wasn’t back to his usual self so Gemma and Rob took him to hospital.

A paediatric ophthalmologist examined Noah’s eye and discovered a mass, so he referred the family to specialists at the Royal London Hospital. Within a few days, Noah was diagnosed with retinoblastoma.

Shock and disbelief

CHECT photo - Noah after his surgery with mum Gemma
Noah after surgery

Gemma, 31, says: “Initially we were just shocked and a bit in disbelief – we had not expected it to be anything as serious as this, we just thought it was a nasty infection.

“The ophthalmologist and nurse were lovely and explained about Rb and the treatment options. Naturally we were devastated, it’s the worst feeling as a parent to know that your child is poorly and could need intense treatment – and to know that there is nothing you can do to stop this.”

Noah had his eye removed about three weeks later, followed by six rounds each of two different types of chemotherapy. In April the family flew out to Jacksonville, Florida, where Noah had four weeks of proton therapy.

Gemma says: “Luckily as a family the NHS paid for me, Rob and Noah’s older brother Dylan to be with him during this time. Noah was very poorly after all of his cycles of chemotherapy – he would be quite sick and not want to eat or drink much for a few days afterwards. He lost all of his hair and was quite tired. The proton therapy had very little side effects.”

Gemma, who is a paediatric nurse, adds: “Noah, who is now aged two, has finished all his treatment and is doing fabulously! He is completely back to his usual self and his hair is starting to grow back.”

Giving back

CHECT Photo - Lee Relf and knight riders
Knight Riders

Amazingly, with all they’ve been through this year, Gemma and her family decided they wanted to raise money for charity.

Gemma says, “Lesley, our Support Worker, gave us so much support and really looked after the welfare of our whole family, providing us with information about charities that had funds to help us with our expenses in hospital and traveling to America. We are so grateful for that, so we just felt like we wanted to give something back. We also wanted to raise awareness of Rb and the symptoms people need to look out for.”

Family and friends got behind the fundraising, particularly Gemma’s older brother Lee Relf, who organised a cycling challenge in July with his friends. A team of 11 lads cycled 130 miles, visiting four castles in Suffolk dressed as medieval knights, raising £9,600.

Gemma says: “The event was fabulous – the whole family went to watch and there was a great turnout, with people lining the road at the end and cheering them on.”

In August, Essex Police – where Rob works as a police officer – organised a charity football match against Colchester United Football Club veterans. Then in September, Lee and his dad Andy bravely paddled the treacherous 50km stretch of sea from the Isles of Scilly to Cornwall in a kayak.

In total, they have raised more than £17,000, including nearly £10,000 for CHECT, with the remaining funds going to Brain Tumour Research.

‘So proud’  

Gemma says: “I am just so proud of Lee and dad, and everyone who has helped out and got involved with fundraising ideas. They have all been fantastic and have done a brilliant job at raising awareness and money for CHECT, so that other families can continue to be supported as well as we have.”

Gemma and Noah’s story features in the latest edition of our newsletter InFocus, out now. You can download a copy on our publications page. All our members receive a copy of each edition in the post. Find out more about becoming a member of CHECT.

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