Theale couple fundraise to save baby daughter battling rare eye cancer
A young couple thought they had endured the worst when doctors removed their baby daughter’s eye after she received a rare eye cancer diagnosis in March.
But a check-up appointment a couple weeks ago revealed two tumours had now appeared in six-month-old Robyn’s other eye.
Her parents, who live in Theale, are doing everything to save her vision and her life and are keen to spread awareness about this rare condition.
Amber Davies, 25, and her partner Jack Giddings, 26, first noticed an unusual white glow in Robyn’s eye while walking down a dark corridor.
“We had the hospital the next day for Robyn’s stomach because she has a cow’s milk allergy, so I said we’d mention it whilst we were there, thinking it was probably nothing,” Miss Davies told newburytoday.
Fortunately, the specialist they were meant to see had phoned in sick and sent a paediatric oncologist in her place, who realised the severity of the situation immediately.
“She referred us the next day back to the eye casualty centre in Reading where Robyn had five more people have a look at her eye,” added Miss Davies.
“They pinned it open wide with metal pins while she was awake, which was horrible.
“No general anaesthetic, six of us holding her down, an eight-week-old baby, it sounds crazy.”
Robyn was diagnosed with Retinoblastoma — a rare form of eye cancer which mostly affects children under the age of five.
Up to 50 cases are diagnosed in the UK each year.
The family have been told that Robyn’s case was the result of a genetic mutation, which could lead to other cancers.
Two weeks after her diagnosis, the couple made the heart-breaking decision to remove Robyn’s eye.
“It was just bulging out of her head and she could not close her eye. When she was asleep, it was open.
“They decided the best thing to do to save Robyn’s life was to remove the eye.”
Doctors told Miss Davies that had the eye been left untreated, it would have erupted inside Robyn’s head and caused cancerous liquid to enter her brain, leaving her dead within hours.
“One minute we thought she was having chemotherapy, and then they phoned to say they couldn’t do chemo anymore and we had to take the eye out,” Miss Davies continued.
“To hear that was absolutely insane. To think you could have been planning a funeral. Especially when you look at her, you can see the cancer looking back at you.”
Robyn requires round the clock support. Her prosthetic eye must be cleaned three times a day and often falls out of its socket, posing a serious choking hazard to the curious infant.
And each bout of anaesthetics leaves her sick and dehydrated.
“Before all of this, she was hard work, and then the eye came out and the next day she was perfect,” added Miss Davies.
“She started sleeping through the night and stopped crying for no reason.
“She wasn’t a horrible baby, she was in pain. That was what she was trying to tell us and we just didn’t know, which breaks our hearts now.
“She’ll rub her eye and I’ll think, is it hurting or is it getting bigger? I’m constantly looking to see if it’s swollen.
“Even saying it now, it doesn’t feel like I’m telling my story. It doesn’t feel real. And then I look at her and think, God, this has all happened to you.
“We beat ourselves up for ages that it took us eight weeks to notice it in her eye, because when you go back to pictures of the day she was born, it was there.
“It was missed because nobody knows what it is.
“We find it really hard that if they had known what they were looking for, we could have saved her eye and possibly her vision.”
Robyn has two more rounds of cryotherapy left, which uses extreme cold to destroy cancer cells.
The latest two tumours are not yet in her line of vision, but will be if they grow.
“The hospital staff we have seen now are just amazing; they have got us through some really tough times,” the young mum added.
Miss Davies is currently on paid maternity leave from her admin job at a plumbing and heating company while Mr Giddings continues to work as a warehouse operative.
But she says Mr Giddings isn’t paid for any time off, which is challenging as Robyn’s condition demands two visits to The Royal London Hospital every month.
“It’s just a frustrating waiting game and three weeks doesn’t sound very long, but it feels like the longest three weeks ever,” she said.
And travel costs are taking their toll on the new family.
With no public parking available at the hospital and public transport not being an option due to Robyn’s vulnerable condition, the couple have racked up huge private parking expenses — with one extended stay costing them £200.
“It’s insane,” she said. “I feel like I’ve paid to have her eye removed. Of course you do it because it’s going to save her life, but it still didn’t quite sit right that I had pay to do this, as I didn’t want to do it.”
The couple started an online fundraiser to support them with their ongoing travel costs, originally setting a target of £500.
The figure has now passed £10,000.
“These £5 donations add up to getting Robyn to hospital and saving her vision,” added Miss Davies.
“There’s no way we can ever repay anyone for that.”
The couple said they wanted to thank their family and local community for their overwhelming emotional support.
Please visit https://gofund.me/b2b55998 to support their fundraiser.
The Childhood Eye Cancer Trust is the only UK charity solely dedicated to helping children and their families affected by retinoblastoma.
Robyn is already receiving support from the charity and will continue to do so as she grows up.
Please visit https://chect.org.uk/ to find out more about the services it provides.
