Harry was eight weeks old when he was diagnosed with bilateral Rb which led him to become severely visually impaired. Now eight years old, Harry is enjoying life at mainstream school thanks to modern equipment and access to support funding.
Treated with chemotherapy and laser at Birmingham Children’s Hospital, Harry is currently having check-ups every four months. Mum Lisa recalls the excellent support they received and the advice they were given in order to prepare Harry for his life ahead.
Lisa, from Lancaster, said: “Birmingham Children’s Hospital set everything in motion for me. We were lucky in that sense, the team were brilliant and they reached out to me first. When you have a very young child on chemo who also can’t see very well – school is the last thing on your mind.”
A visual impairment teacher visited the family once a week and, at the age of two, Harry also received funding for support during pre-school. As Harry was already great at interacting with other children and was coping really well at pre-school, the decision was made to send Harry to a mainstream primary school.
“It was suggested that Harry could go to a specialist school for the blind – but I wanted to try mainstream. We got in touch with the school and with support from the hospital, put a case forward for Harry’s equipment.”
The one-to-one support that Harry had received early on in life ensured that he was already off to a good start. The application for funding was successful and Harry was able to access the equipment which could help him the most in his transition into school.
Since starting school, Harry has received a specialist Prodigi electric magnifier, a laptop and an electronic brailler. The Prodigi equipment shows a high resolution camera image of the teacher and board. This way, Harry doesn’t always need to sit at the front of the class, it’s also portable so he can take it with him.
However, all of this equipment is not cheap – thankfully Harry’s school was able to secure the funding.
Lisa added: “Harry’s school were always supportive, even helping to source, finish and send off relevant support forms. They also reassured us that if external funding didn’t come through, that the school would pick up the bill.”
Despite needing extra support compared to other pupils at mainstream school, Harry is flourishing and is now on his school’s gifted register.
Lisa said: “Harry does great at school – it’s possibly the way he manages his mind. The way he remembers information, being visually impaired, he’s learnt to remember from verbal communication very easily.”
“It’s important that parents with visually impaired children seek support and sort out arrangements for their child’s education as soon as possible. During their treatment, all you can think about is them getting better as soon as possible. Then you suddenly realise – school.”
Lisa added: “I hear from some parents that trying to apply for support is like banging your head against a brick wall sometimes. There’s a Facebook Group for parents of visually impaired Rb children. It’s definitely worth getting involved with that to get advice from parents who have gone or are going through the same thing as you.
“Start asking questions about school now. Hearing back can be a long-winded process, six to eight months after a letter is sent is often when you can expect a reply. Get the school involved as soon as possible too to ensure they get the best start in life.”