BBC Lifeline Appeal – Childhood Eye Cancer Trust
like a camera our eyes help us to focus on what's important and to capture our most treasured memories but every year dozens of babies and toddlers face the
prospect of losing their sights of cancer when Alice was two-and-a-half I was playing a game with her point to mummysnose and I covered one eye pointing to mummys nose and she could couldn't point to my nose or I spoke to my dad he suggested to what play pirates with her Alice's being a pirate can you see Alice Alice Wayne hello to nineteen granddad when I covered her
good eye she sort of walked into a door and couldn't see anything there and I think that was the immediate point that I knew sort of something seriously is wrong here she she can't see I just remember feeling sick so our options were either a nucleation which is
like removing her eye or chemotherapy rats Alice was diagnosed with the devastating eye cancer retinoblastoma a cancer that develops in the retina the light-sensitive lining at the back of our eyes now it was a difficult time for Alice and her family but fortunately the childhood I Cancer Trust
was there to provide a support and advice Leslie is a specialist of retinoblastoma support worker for the charity one of two covering the whole of the UK when your child is first diagnosed with retina blastoma parents can feel numb they can feel a huge sense of grief and
devastation and almost disbelief because for most families this is something that happens to somebody else not to them Leslie was sort of always around I think that was really important and it was almost like although it was a hospital visit and there were things that Alice hated going
on during that hospital visit there was also that key thing that she was going to see some people she knew there and Leslie was someone to talk to about any concerns that you had and she class Leslie as her friend after months of difficult chemotherapy things were starting
to look good for Alice but then in February last year Alice relapsed the surgeon suggested trying inter arterial chemotherapy which is chemotherapy that goes directly into the back of the eye and I think that was the point where we said we don't want her to go through anything
that she doesn't have to go through how do you tell a three-year-old that there is going to be removed and how much of an understanding do they have about that we felt was best better that we did it with the support of people who had already done that
and knew how to best go about that unfortunately currently around half of all children diagnosed with retinoblastoma will need to have one or occasionally both eyes removed to stop the cancer from spreading this is why the childhood eye cancer trust known as checked need your donations so that
their support workers can give families like Alice's the skills and confidence that they need to cope Alice is comfortable with her artificial eye she is happy to tell people about their Alice's confidence is definitely downs her how we've learned to deal with the situation and I think about
has come firmly speaking to Leslie at the hospital the main thing is we as a charity are there for them whatever they want an early diagnosis of eye cancer can help to save a child science which is why the childhood eye Cancer Trust has for over three decades
funded research into many areas include any advancements in genetic screening which is so vile for children that are at risk of inheriting the disease rob was diagnosed with retinoblastoma in the 1970s I was 14 months old when they operated to take the eye away but not only that
to keep me alive rob was special I fell in love with him he said that eat had retinoblastoma as an infant and that if we choose to start family in the future our children may be diagnosed with the same illness when Joshua was born in 2002 doctors couldn't
see any tumors but six weeks later following more tests Joshua's diagnosed with retinoblastoma your world comes crashing down at the same time you know the treatments aren't there it was basically yes you're in a good position had to have been waited three months the tumors that Josh already
had would have got bigger and if we know that a child a baby is going to get retinoblastoma as early as possible we can treat those tumors early and that will save the child's vision save the child from having to they have the eye removed and save the
child's life Joshua's brother Jamie was also born with eye cancer incredibly Jamie was diagnosed even earlier than his brother his RP was discovered when he was only four days old over the last ten years the childhood eye Cancer Trust has been funding research realizing that if you can
get these babies into the system earlier through genetic testing it can make a big difference without the research that check are doing and funding they would be in the same situation as what I was in back in the seventies [Music] with long intensive treatments and for some the
loss of an eye the trauma of childhood eye cancer can linger through to adulthood as was the case for 17-year old Harry I was reading because I used to be a bit of a bookworm and these black spots my eyes kind of like blocked outwards and we went
to the opticians and they said whoa Harry was diagnosed with retinoblastoma later than what would be expected was quite scary for me at first especially with eight-year-old private school fellow students going oh my god that you're gonna die but following two long years of chemo Harry needed to
have his left eye removed my mum was crying and so I think I kind of took that in a way that kind of went I can't be sad because mums crying I've gotta be I've gotta be strong Harry found himself struggling and needed counseling there was definitely a
feeling of isolation IRB being such a rare cancer it is also rare that you come across somebody who knows exactly what's going on who feels the same as you do that's why the childhood eye cancer trust established a team focus Council given teenagers like Harry an opportunity to
come together and share their experiences I've made plenty of friendships with the team focus Council I can always have a laugh and we can have a joke maybe even I related jokes I think it's really important to laugh about it it's really helpful to give other people a
chance to get involved and to learn about chats and what we do life is quite isolating if you let it be like that which is why I like coming to stuff like this as often as I can I no longer worry about whether my eyes restrict me too
much I definitely think chapters help with my confidence early detection is key and a simple thing like a photograph can help a white glow seen in the eye or in flesh photos can be a sign of retinoblastoma eye cancer is rare but it always makes sense to get
checked if you see anything that concerns you to help more families and children like Alice Harry Josh and Jamie please please make a donation to checked the childhood eye Cancer Trust to make a donation please go to the website checked org dot UK forward slash donate if you
want to donate by phone then call o 207 three double seven double five seven eights or if you'd like to post a donation please make your cheque payable to checked CH ECT and send it to childhood eye Cancer Trust the Royal London Hospital Whitechapel Road London II 1
1 BB thank you you
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