A FAMILY whose eight-month-old baby has been receiving chemotherapy for an extremely rare eye cancer in Aberdeen since November has managed to raise almost £10,000 for the Archie Foundation.
Baby James was just three months old when his parents Paula and James Manson, from Brae, noticed a white glow in his left eye and took him to see a GP locally in October.
They were immediately referred to the Royal Aberdeen Children’s Hospital and 11 days later an ophthalmologist informed them that James was believed to have retinoblastoma – a cancer which develops in the cells of the eye’s retina – not only in his left eye but also his right.
Around 50-60 cases are diagnosed in the UK every year, usually in children under the age of six. The Childhood Eye Cancer Trust (CHECT) says that around 98 per cent of children with the condition survive, but that early diagnosis is vital.
On 3 November, following an eye examination under anaesthetic at Birmingham Children’s Hospital, specialists confirmed the retinoblastoma diagnosis and performed James’ first laser surgery at the age of just three months.
Having researched the condition they were “kind of expecting” the diagnosis, but “it is so rare that you think, it doesn’t really happen to folk”.
James’ mother and father have both been down in Aberdeen with him for nearly six months, and he has just undergone the fifth of six courses of chemotherapy treatment.
Paula said they were initially put up in accommodation at the hospital, but around three weeks ago the Archie Foundation, a charity which helps sick children in the north of Scotland, was able to provide a flat as they had been there long-term.
“They’ve been very, very good with us,” she said.
It was James senior who first noticed something untoward. They had seen a white glow in his left eye in photos and “assumed it was a reflection of the camera flash”, but when they noticed the glow in dim light “we realised something was wrong”.
Paula, a 29-year-old ASN teacher, said James had handled his treatment, which started on 14 November when he was just over three months old, really well.
“You would never know that he was ill, that he was going through it,” she said. “He’s always smiling and giggling.”
The family, too, have coped well with the upheaval. James, also 29, is a joiner by trade and his employer has been “excellent” in allowing him to be with his nearest and dearest.
“We have actually managed really well, because all three of us are together,” Paula said. “It’s probably a bigger impact on the wider family, who are not able to see us or their new grandson very often, but we get plenty visitors.”
It is expected James will receive his final session of chemotherapy in May. A few weeks after that, once he has been to Birmingham for another examination, they hope to be able to get home to Shetland in the summer.
Paula says it is likely that James will go away for monthly examinations for the next year, with more intermittent appointments likely to continue until his 16th birthday.
She stressed the family were not sharing James story to look for sympathy, but to raise awareness of the condition.
“Awareness is key,” she said. “We hear all the time about the warning signs of other cancers, but I’ve never been aware of a poster or leaflet about retinoblastoma anywhere, until now. It’s rare, but it’s still real.”
This weekend James’ granddad Peter and step granny Sandra are getting their heads shaved to raise money as a thank you to the Archie Foundation for the dedication it has given the family.
Sandra paid warm tribute to the foundation’s work: “They have been supporting them since they arrived in Aberdeen, and always make sure they have everything they need, which is what we’re extremely thankful for.”
The online fundraising total currently stands at just over £3,000 and there are cash donations of more than £6,000 with more expected to come in.
Sandra described those figures as “phenomenal” and said the family was “gobsmacked” and “absolutely overwhelmed” by the level of support from the community.
She added that James was “the happiest peerie fellow that you could meet – I canna wait to get down and see him again”.
- Peter, who has been having his hair and beard dyed various colours this week, and Sandra will be getting their hair shaved at the Lights function room of Brae Hotel on Saturday (1 April). They are also holding a raffle in aid of the special nursery neonatal unit in Aberdeen. You can donate via their JustGiving page. You can read more about retinoblastoma on the Childhood Eye Cancer Trust website.
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