A mum has issued an urgent warning to parents if they notice a strange glow in the eyes of their child in photographs.
Natasha Mead and partner Ben Sala took their daughter Ella to see a doctor after they noticed a strange white spot in her eye in photos they had taken.
The couple, from Hull, also noticed something was not right with Ella when she was around six months old as she struggled to eat despite being advanced in many other ways.
They initially explained away the odd signs but decided to take Ella to the doctor in June this year.
The tot was quickly diagnosed with retinoblastoma – a rare childhood cancer that affects roughly 44 children in the UK per year.
Around 40 per cent of cases are diagnosed in the first year of life.
Ella’s condition is even rarer because, sadly, she has tumours behind both eyes which only happens in a third of cases.
Natasha told Hull Live : “Ella is completely blind in one eye and has severe sight loss in the other.
“She has just finished six cycles of chemotherapy. She got very sick and needed blood transfusions. She also suffered respiratory problems.”
Natasha is speaking out in a bid to warn other parents not to take any chances if they notice something isn’t right.
She said: “Ella is our first child so we didn’t know what might be unusual or not.
“My partner noticed Ella was a bit bog-eyed.
“She was also quite advanced but we noticed she was struggling using a spoon. I had to go back to work early because of the pandemic so we sent Ella to nursery and staff there also noticed she was struggling to eat.
“We initially put it all down to her just being a baby but we were advised to get her checked out.
“Doctors immediately recognised something was not right and she was seen by a specialist and diagnosed with retinoblastoma.
“Ella went to see a specialist in Birmingham and she has to go there every month for check-ups.”
Retinoblastoma occurs when nerve cells in the retina develop genetic mutations.
These mutations cause the cells to continue growing and multiplying when healthy cells would die. This accumulating mass of cells forms a tumour.
At diagnosis both of Ella’s retinas had completely detached, leaving her blind in her left eye with little vision remaining in her right.
Natasha says early diagnosis can be crucial.
“There is a phrase ‘know the glow’ which highlights the fact the white spot on eyes if children in photos can be a sign of cancer,” she said.
“Phone cameras don’t really use flashes but it is still important to know.
“Since her diagnosis we have come across photos taken when she was roughly six months old and the glow is there in her eyes for all to see.
“It’s such a horrible feeling knowing these photos have existed but we didn’t know she’s has been fighting this awful disease for so long.
“I just feel other parents need to be aware and not to be embarrassed about seeking help. If it turns out to be nothing no one will laugh at you.”
While Ella, now 18 months, has finished her first cycle of chemo, she will need further treatment.
“She may need further chemo in smaller doses while she also has laser treatment and cryotherapy which liquifies the tumour cells,” Natasha explained.
“The tumours cannot be removed because they are too close to the retina.”
Ella has had several MRI scans to make sure that the retinoblastoma has not invaded her optic nerves or spread from her eyes to other parts of her body.
Retinoblastoma tends to affect very young children but it has life-long effects.
Natasha said: “Ella’s tumours have shrunken massively thanks to the chemotherapy but she is still unfortunately not cancer-free.
“The cancer is due to a faulty gene which can be hereditary but both me and Ben have been tested and we don’t have it. It seems she has just been really unfortunate, bless her.
“Even if the treatment works there is a chance it could return around the age of seven. It also means she is susceptible to other cancers.
“She will need to get check-ups and an MRI every year. The medical staff hope Ella can go on to lead a full life.
“If it had been just one eye then they would probably remove it but at the moment they are treating both eyes.
“The priority is to save Ella’s life, then to save her eyes and then her sight if possible.
“Thankfully, this is one of the most survivable cancers but it causes a lot of damage.”
Natasha has praised her daughter for the way she has taken everything in her stride.
“Ella is amazing,” she said.
“She has just got on with it all.
“She is such a happy child and most of the time you would not know there was anything wrong with her.
“Ella is just so outgoing and willing to get stuck in.
“I was worried when she was diagnosed and started treatment, Ella would lose her happiness.
“She has been very sick at times after treatment but she always bounces back.
“The chemo has made her immunosuppressed. Every month she has caught the common cold which has made her spike a fever which means she has ended up at Hull Royal Infirmary for a few days per month.
“The chemo drugs have also made her go off foods. So she had a NG tube inserted up her nose and down her throat so we can manually drip milk into her.”
Natasha admits it has been very tough watching her daughter looks so vulnerable and poorly.
“Seeing her become so ill every month and watching the side effects of the chemotherapy take hold of her tiny body has been a horrendous time for our family,” she said. “The damage the Retinoblastoma has caused to her eyes has been heartbreaking.
“But she remains a happy little girl. The only thing is she has port in her chest, a kind of catheter, which allows for the chemo drugs to be administered into the main artery. It’s also used for routine and emergency blood samples to be taken.
“But this has made her wary about strangers and anyone lifting her top.
Natasha admits it has not been easy for her and Ben but the sacrifices are necessary.
“For the first few months it was heartbreaking but you just have to get on with it,” she said.
“It has been a very gruelling time as we have a number of appointments to attend and monthly trips to Birmingham. It has taken up a lot of our energy but it is worth it if it can help Ella.
“Apart from Ella’s initial appointment in Birmingham, due to Covid restrictions, me and her dad have not been able to attend them together with her.
“It’s been a struggle having to manage the amount of information we are given alone, especially the hard news.
“Her first birthday was spent in Leeds General Infirmary having a lumbar puncture and spinal tap – used to be certain the cancer has not spread into her bone marrow.
Natasha hopes Ella will be able to live a full and happy life in due course even if her sight is severely impaired.
George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.