Ethan’s mum Bhavna describes her son as “cheeky, chatty and kind hearted.” He adores cars, particularly go-carting and all things techy. Ethan would one day love to be a Youtube star or radio presenter, with millions in the bank. His positivity and ambition remain intact, despite a really turbulent couple of years since his sight began to rapidly deteriorate. Bhavna credits the help and support her family have received from the Royal Society for Blind Children (RSBC) and in particular, their Family Support Service, for stepping in to offer advice and professional guidance when they found themselves in crisis and facing an uncertain future.
Life Without Limits for Blind Young People
RSBC first came to Bhavna’s attention in early 2016, when she spotted one of our posters on a London bus. The poster’s image of a blind girl with a cane, getting off a bus, with the words “Life Without Limits for Blind Young People” really struck a chord with her. As soon as Bhavna got home, she dialled the number and asked an RSBC advisor if we could provide her with some emotional support as well as provide Ethan with opportunities to meet other vision impaired children.
Bhavna explains, “I was so intrigued by the poster and liked the message of hope that it conveyed. It wasn’t long after Ethan’s diagnosis of Stargardt disease had been confirmed and I wasn’t coping well. Within just three months of being diagnosed, Ethan had been registered as sight impaired. The shock and devastation had consumed me. We’d been a normal family with a healthy seven-year-old and in just a matter of months he’d lost a lot of his central vision. I worked as a teacher, so had to just put on a brave face, but in reality I was distraught and I would break down regularly when I was on my own. I knew I needed help in order to give Ethan the right support, but up until this point, I’d really struggled to find any organisations or support networks that felt right, so I was very isolated.”
“My mind was swimming with questions, like how will he be happy, where will he go to school? At the beginning, Ethan would say things like, “Mummy I don’t want a life when I can’t see”, which was heart-breaking to hear. All we could say to reassure him was that we’d do everything we possibly could to help him. We focused on the practical things, like talking about the type of equipment, such as magnifiers, that would help him to continue to read and cope in the classroom.”
“Nothing was impossible”
“Fortunately RSBC were on hand to help. They told me about the activities and weekend clubs they put on for vision impaired kids and I really liked the sound of it. We took Ethan along to a club in Tower Hamlets, where he quickly got stuck in to some cricket and football. Most importantly, he got chatting to other vision impaired children, some older than him, some with other disabilities and he just had a laugh with everyone. For me it was a chance to meet and talk to other mums and dads, which is what I really needed. The energy and enthusiasm of the staff and volunteers all helped to make us feel like nothing was impossible.”
“The help we’ve had from the Family Support Service has been fantastic too. To get emotional support from someone who is neither a friend nor a relative has been crucial for us. Michelle [RSBC Family Support Worker] has been a life saver really for the whole family. She has so much experience and recognises that every child and every family unit has different needs. She visits us at home and also checks in with Ethan at school, giving him a real safe haven to talk about stuff he’s going through. I know he won’t always tell us everything, so it’s important that he has this time with Michelle an outlet too.”
“I know that RSBC has played a big part in that”
“The nature of Ethan’s condition means that his sight drops and plateaus from time to time. It feels like a grieving process each time, but now we have the tools to talk and try to come to terms with it. Now and then Ethan will come out with something and I’m not quite ready to respond, such as “Mummy I’ll never drive a car will I?” or “I’ll never see my children.” It’s really hard to know what to say sometimes but it’s good that he says it out loud rather than bottling it up. We talk it through and often we can come up with some ideas to make it better, like giving him lots of driving experiences in a safe environment, which led to him driving with the world go-carting champion!”
“I’ve always worried that Ethan’s sight loss would change his character, crush his positivity and passion for life, but so far that’s not the case. His view is that everyone has problems and this is just his. I know that RSBC has played a big part in that.”
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