SIGNS AND SYMPTOMS
At seven months old she lost an eye to a rare cancer through a faulty gene as it was spotted too late to save it.
So when she became a mum herself she was determined to make sure her own children didn’t face the same fate.
When doctors found her son Raphael, now eight, hadn’t inherited retinoblastoma, a wave of relief came over her and partner Andy.
But when it came to tests on daughter Autumn born in November 2017, the luck ran out – and Kalli, 33, was hit by the despair her own mother had felt all those years ago.
“It was such an emotional day,” Kalli recalls. “I was probably a bit naive about it as Raphael hadn’t got it.
“Even though I knew Autumn had about a 50% chance of her blood tests coming back positive, I still wasn’t prepared for the news when it came.
“The chance of a child carrying that gene going on to develop tumours is extremely high, so from that moment I knew she’d probably need treatment.”
Retinoblastoma is most common in children under five. About one child a week in the UK is diagnosed with it.
And while over 95% of cases can be successfully treated, 40% of children will lose an eye.
TUMOURS
Early detection is key to preventing loss of sight, but in Kalli’s case 32 years ago no one realised there was anything wrong until one of her pupils became cloudy.
Her mother took her to the GP and within days she was at London’s St Bartholomew’s Hospital, where the eye was removed and she began radiotherapy. “They found tumours in both eyes, but caught them early enough in the second one,” says Kalli, of Brecon, Powys.
“They got rid of the cancer completely, so then it was a case of keeping a regular check on things.
“It’s a childhood condition so, as you get older, the chances of something growing becomes less and less. You always have to be vigilant though – radiotherapy kills tumours, but it can also make them happen.”
Kalli is very matter-of-fact about her own experience of cancer, saying: “It was just part of life and I never really thought about it. You don’t really register these things when young.”
But she admits her knowledge of the condition, and of how far medical science has come since she was a child,
Kalli and Andy with Autumn, who has responded well to treatment Picture LUCY GOLD Anyone noticing any of the following symptoms in their children – or with other concerns about their eyes – should visit a GP. An unusual white reflection in the pupil – this may occur in photos where only the healthy eye appears red from the flash. Squint
Change in the colour of the iris Poor vision – a child may tell you they cannot focus on faces or objects. They may not be able to see as well as they used to
A red or inflamed eye
made it easier for her and partner Andy to bear their daughter’s diagnosis. “I’ve had to have an eye removed and it does affect you, but I have a great life and I know it can be fine,” she says. “Having been through it myself and understanding the sort of support that is out there definitely helps.”
Autumn, who turned one last week, started having her eyes examined every three weeks at Birmingham Children’s Hospital, so as soon as her tumours
GRATITUDE
“All the other children we have met are like me, in that their parents didn’t know in advance and weren’t aware of the signs to look for – so their child’s tumours progressed.
“Many of them have lost sight in one eye or need chemotherapy. It’s so tough to see. Knowledge really is everything.”
The family’s gratitude has inspired Kalli to donate some of her own and Autumn’s blood to a project funded by the charity Fight for Sight.
Pioneering stem cell research by Professor Majlinda Lako and other researchers at Newcastle University aims to discover more about which retinal cells are affected by the cancer.
They hope this will allow them to better predict whose sight could be saved, as well as increasing the success of eye injections during chemotherapy so the therapy targets every affected cell. “This research won’t necessarily help us, but it will help other children down the line,” says Kalli.
“I’m due to have another baby in April, and we don’t yet know if he or she will inherit the gene.
“Awful things happen to everybody though and you have to get on with it. We are so grateful there are people smarter than us who can help.”
■ Fight for Sight is the UK’s leading eye research charity. For more info or to donate visit fightforsight.org.uk
Even though I realised Autumn had a 50% chance of positive blood tests, I wasn’t prepared for the news