Baby having life-saving treatment in Spain 'improving' and telling nurses 'hola'
A couple fighting to keep funding life-saving treatment in Spain for their little boy says the improvement is “remarkable” and he’s even started saying ‘Hola’ to nurses.
Nick and Rachel Samuel told how they face a race against time every month to raise the cash to pay for their 21-month-old son Robin’s cutting-edge treatment.
They say it is his best chance of survival and have already seen him getting “better and better and better”. But they need to raise another £343,000 to finish the vital immunotherapy sessions in the Barcelona hospital.
Mum Rachel from London, whose son has high-risk neuroblastoma cancer, told The Mirror: “It’s amazing to see. It’s brutal treatment but he is the one who keeps us going. Seeing him bounce back even more every time, it’s encouraging for us.
“We can moan and gripe but we only have to look at him for five seconds and it's enough to get us to carry on. He’s improving all the time.
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“I’ve noticed he is continuing to thrive like any normal toddler, he’s very close to walking. I can feel his muscles getting stronger all the time.”
She says her boy - with the “winning smile”- is adored by the doctors and nurses who are looking after him. “He’s becoming quite Spanish too. He loves it here. He’s a real night owl and thrives on people,” she said.
“He has that incredible smile and is saying a few words now. His favourite word is ‘flower’ but he’s also started saying some Spanish words too like ‘Agua’ and ‘Hola’ to the nurses.
“He’s in a different country, surrounded by different things but it doesn’t seem to matter - he thrives on meeting people. They love him, he has very bright eyes and an incredibly cute smile. “
The couple told how they now have to raise even more funds than expected, after a horrifying setback when they first arrived for his immunotherapy in Spain.
A tiny tumour was found which needed to be treated first, eating into their funds. His mum said: “I was absolutely devastated, we were not expecting that.
“We had spent so much effort to get here and it was a really amazing moment but then he had his diagnostic tests and we knew there was something wrong as the doctor asked for a special test. But it was a disaster from the financial point of view but not in terms of health.”
The mum says she has felt “ashamed” asking for money but has been overwhelmed by the response. She explained: “That was really hard but people have responded amazingly. I have witnessed some amazing acts of generosity and brought out the best in humans. It’s quite overwhelming.”
This month the couple have so far raised £15,000 of the £80,000 needed for the next session. While Robin has his treatment every spare time is taken up trying to raise funds to pay for it.
Because Robin suffered a “high risk” cancer, if it does return it could grow “stupidly fast” and be hard to control. His family say the “next-generation treatment” he is receiving could almost “double his chance of survival”.
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Rachel, 43, a communications manager and her husband Nick, 39, a composer from Muswell Hill, explained the treatment is not available on the NHS.
The rules in England, they say, state Robin would have to endure a further gruelling high dose three-month chemotherapy regime to qualify.
In Spain, medics told them they had stopped this practice 12 years ago - instead using the pioneering therapy which only targets the bad cells - not the whole body.
The immunotherapy treatment is taking place at Sant Joan de Deu and is being given to Robin as an outpatient. “We just want to give him the chance to have a long, healthy and hospital-free life,” his mum added.
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