Family's heartbreak after baby boy lost eye through retinoblastoma

Natasha Finney and her partner Alex Finney, both 29, are hoping to raise awareness about retinoblastoma after their little boy AJ lost his right eye when he was 11 months old in November last year.

Speaking about AJ's journey, Natasha said: "This week is World Retinoblastoma Awareness Week and so we just want to get it out there as much as we can.

"It all happened so quickly for us, literally within three working days of us taking him to the GP, he was in the specialist unit.

"And then within two weeks he had his eye removed because the tumour was that big.

AJ and his dad Alex

"So, we are just desperate to get as much awareness as we can so that no one else has to kind of go through what we did.

"Basically, this one particular day back in November, our little boy, AJ, eleven months at the time, woke up and his eye was just really cloudy and so I just said to my husband, take him to the doctors today, you know it will probably just be an eye infection or something like that, you know what babies are like.

"They touch things that they shouldn't and then they touch their eyes, you know he's probably just got an eye infection.

"So, my husband took him to the doctors, and they could see that something was wrong but didn't know what it was.

"So, they referred us to the eye unit at the Royal Bolton Hospital, again they scanned him, they did tests on him, they did all sorts of things to try and figure out what it was.

"They couldn't figure out what it was, so they referred us to the Manchester Royal Eye Hospital.

AJ's parents noticed his eye was cloudy

"So, we went there the day after, again they did loads of tests, and they managed to get an ultrasound of the back of his eye and then they basically said to us do you know what retinoblastoma is.

"We said no and they basically said don't google it, but obviously we did Google it, we went through the right channels, we went through the NHS website, typed it in and obviously the first sentence said retinoblastoma is a very rare child's eye cancer.

"And our world just kind of fell apart at that point.

"We were told there is only two places in the UK, Birmingham or London, that will actually treat it because it's very specialist.

"So, we went closest, we went to Birmingham and basically he went there the following Monday and they confirmed it was retinoblastoma.

AJ on his first birthday

"But they basically said that his tumour was too big, and it was actually quite a dangerous one and they said the safest option for us was eye removal, which again tore our world absolutely apart because then you’ve got to get your head round that your one-year-old is going to have his eye removed.

“They said it was him or his eye.

“So obviously as parents it’s a no brainer in that situation.

“So, we had his eye removed the day after his first birthday back in December, about ten days later they put an implant in but because he had an infection his implant rejected.

“So then about five weeks ago, he had a fat graft, they took some fat from his bottom and put that into his eye socket, stitched it in but luckily that was zero per cent chance of rejection, which was music to our ears.

“He’s just gone through every complication, but he’s just took it completely in his stride.

AJ Finney who is now 17 months old

“He’s 17 months now and he’s been living with his prosthetic eye for a good five months now.”

Natasha has an Instagram page which follows AJ’s journey, raising awareness and getting people to look out for the signs and symptoms.

The couple also work closely with the Childhood Eye Cancer Trust (CECT), to raise awareness as much as they can because it is so rare.

Natasha said AJ is currently doing really well.

She said: “AJ took his first steps on the day that we took him to the GP but because we were back and forwards with going to Birmingham, he kind of lost his confidence and with losing his eye he lost his balance.

“It took him a couple of months to get back into walking again, and it took him a good month to stand up again.

“But he’s just absolutely brilliant, he’s very cheeky and he’s got the most contagious smile that you’ll ever see in your entire life, he just takes everything in his stride.”

AJ and his mum Natasha

AJ will be going back to Birmingham on Tuesday for a new prosthetic eye to be fitted.

Patrick Tonks, chief executive of CHECT said: “Retinoblastoma is rare, with around one baby or young child being diagnosed in the UK each week.

“Symptoms can be quite subtle, and children often seem well in themselves which can make it hard to diagnose.

“In just under half of all cases, such as in AJ’s case, a child has to have an eye removed as part of their treatment.”

“We are extremely grateful that in AJ’s case, his symptoms were recognised, and an urgent referral was made so that he could receive treatment.”

The family are hosting a special fundraiser this weekend that has already sold out to raise money for both The Childhood Eye Cancer Trust and Bolton Wanderers in the Community.

They hope to make it an annual charity night to raise money for the two charities going forward and make it bigger and better every year.

AJ still smiling even after his surgery

Retinoblastoma is a rare and aggressive form of eye cancer that affects babies and young children, mainly under the age of six.

Around 50 cases are diagnosed a year in the UK – or one child a week.

It represents three per cent of all childhood cancers and 10 per cent of cancers in babies under the age of one in the UK.

Around 98 per cent of children survive retinoblastoma in the UK but early diagnosis is crucial in order to save a child’s eyes, sight and life.

The most common symptoms are a white glow in a child’s eye or pupil in dim lighting or when a photo is taken using a flash, and a squint.