The Childhood Eye Cancer Trust (CHECT) is a UK charity dedicated to helping people affected by retinoblastoma, a rare form of eye cancer. Their mission is to support people affected by retinoblastoma and to raise awareness of the signs and symptoms of the condition. This blog shares the brave stories of affected children.
17-year-old Beth Holman shares her experiences of growing up with a visual impairment having been treated for bilateral Rb as a baby.
I don’t remember my retinoblastoma treatment. I remember the check-ups – long days, the anaesthetic and the McDonald’s I always begged for on our long drive home – but not the treatment.
But I know that my family can remember it.
This encourages me to constantly make my loved ones proud no matter how difficult things may get.
When I was around twelve weeks old, I was taken to my GP because my mum noticed a white glow in my eyes. Doctors were baffled and next followed a frustrating and lengthy process of being sent to the local hospital, until I was finally diagnosed with bilateral retinoblastoma – cancerous tumours in both eyes.
I had several rounds of cryotherapy, radiotherapy and chemotherapy before having my right eye enucleated just before my second birthday. I am now 17 and though I’m now in remission, the remaining tumours in my left eye limit my sight to only peripheral vision.
Despite all that, I have a strong passion for photography and wish to pursue it as a career. I proved everyone wrong with my GCSEs by getting amazing grades overall – particularly in photography – and I am determined to do the same with everything else in life.
I constantly have people asking me how I manage with photography or if I’m actually any good, and this can be disheartening as people doubting you can make you question your own ability – I know that I can do it, and having faith in myself is the most important thing.
I also have a very prominent love for makeup. This is something which has taken me a long time to adjust to. I have had to teach myself techniques to match both sides of my face and not let my blind spots stop me. I have also learnt to create the illusion of more symmetrical eyes than I actually have, which is something I used to do every single day.
I don’t feel it necessary to wear makeup anymore though, as I choose to embrace my artificial eye most of the time. I do it now because I enjoy the process, being able to demonstrate my skills, and to show that I can do things that people don’t expect from me.
Some of the key things I’ve learnt is to have good lighting when doing anything detailed like makeup, to have perseverance but to also adapt. I’ve got several different mirrors in my room, which serve a unique purpose: a hand held one for needing to be close to my eyes and some different mirrors which are angled to reflect into each other, allowing me to see the right side of my face which I can’t do with just one stationary mirror.
I am aware that I can stand out because of my prosthetic and I was sometimes bullied in school because of it. I look at people at an odd angle because I can’t use the right side of my vision and I also have a nystagmus, an involuntary movement of the eye, so it appears that I am looking all over the place all the time. As you can imagine, to someone who doesn’t know me, this could be very off-putting and strange. I sometimes get asked ‘what I’m looking at’ or if ‘I’m staring at someone’ and this can be an awkward situation to address as I feel obliged to explain my condition.
As I’ve gotten older this has become easier to deal with, I have learnt different coping strategies from CHECT and have adapted to explain what I feel comfortable with rather than feeling pressured into answering questions.
I have always attended mainstream school and am currently doing my A levels after receiving good GCSE results last year. I put in lots of effort and being a survivor of Rb did not limit my academic potential.
Meeting people through CHECT events and Teen Focus Council has been incredibly helpful and rewarding – until I started attending these events, I hadn’t previously met many others who have had Rb.
I now have some amazing, supportive and inspiring friends who I have met through the charity and have learnt from. I love being involved with the Teen Focus Council because I want to give back and make the phenomenal support that I’ve had from CHECT even better for others in the future.
As we near the end of one school year, many are already looking to the new start in August or September. Whether starting nursery for the first time, moving up to primary or transitioning to secondary, the new school year can bring new challenges.
Will other students ask your child about their artificial eye? What if it falls out at school! And are there any tips for helping children with a visual impairment in the classroom?
This blog brings together a wealth of information which we hope you will find helpful, as well as signposting further resources and useful organisations. If you have queries about any of this information please don’t hesitate to contact your support worker.
It’s never too early to get involved with your local visual impairment / sensory team. Our Early Years & VI leaflet has information on how to register as blind or partially sighted, and the support you can access, before, during and following the nursery years.
A good starting point is our webpage In School or Nursery, which covers topics such as starting a new school, taking part in sports and talking to other children about a visual impairment. Linked to this is the Artificial Eyes School Action Plan with practical tips for if an eye should come out at school!
Rb parent and visual impairment teacher Marie Lloyd has written an excellent summary of the educational support available to all children with health needs or a visual impairment after retinoblastoma. And it’s not just relevant to school-age children. Local authorities and schools now have a responsibility to provide centralised, coordinated support, focused on the needs and aspirations of the child or young person, from birth to the age of 25.
Whether your child has learned to read yet or not, there are a number of organisations out there providing access to a whole range of literature. From Spot the Dog to Harry Potter (as well as books for adults); in large print, braille or audio, the magical world of books is just waiting to be discovered.
We know there is nothing like hearing from other families about their experiences, so why not check out Jodie’s blog about her son Jude starting school, or Lisa’s piece on giving visually impaired children like son Harry the best start in life.
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.”
We often feature our wonderful CHECT mums in our stories, and we feel it’s important to recognise those amazing dads out there who go above and beyond to support their families as well.
For Father’s Day, we asked children (with a bit of help from mum) to nominate their dads for an honorary CHECT Champion Award. Congratulations to the awesome dads below who were nominated, each of you will receive a special CHECT Champion certificate!
Champion Dad: Charl Koekemoer Nominated by: Taigh Koekemoer (age 20 months)
written by Charlene Koekemoer (mum)
I [Taigh] would like to nominate my hero Dad for the Honorary CHECT Champion Award.
I was diagnosed with Rb at nine weeks old and had my right eye removed a week later (five days before Christmas). We had to travel from Ireland to Birmingham to have the operation and then fly over every month thereafter for check-ups. My mommy was very upset and really struggled with what was going on with me.
When I was in hospital for three days in another country, daddy sat with me in the hospital feeding me, loving me and playing with me so that mommy could have a break and go shower and sleep at the hotel for a few hours. We even met Batman together.
My daddy comes with me to every check-up appointment, every oncology appointment and every ocularist appointment… and I have had A LOT of appointments. When I have my appointments my daddy helps distract me so that I am not scared while the doctors are doing their checks.
I know my daddy can be scared sometimes too, but without my daddy’s strength and help, mommy and I wouldn’t have come out as strong as we are after my Rb diagnosis.
Champion Dad: Tom Roselle Nominated by: Bea Roselle age 19 months
written by Susie Roselle (mum)
My daughter Bea and I would love to nominate daddy Tom.
Tom was diagnosed with retinoblastoma when he was only little. Unfortunately, along with chemotherapy treament, he had to have his right eye removed. Bea thinks her daddy is her hero because she has to have her eyes checked regularly and often under general anaesthetic to ensure she doesn’t have any signs of the same cancer.
Her daddy is always there for her when she goes to sleep and when she wakes up. Bea’s toy mouse ‘Pipsqueak’ also joins Bea in the operating theatre and gets dressed up for the occasion!
Along with being a full-time stay-at-home dad and running his own business, Tom is always trying to help others and is almost at the end of a five-year degree to become a chiropractor.
Champion Dad: Phil Booth Nominated by: Monty (age three) and Harry (age eight)
written by Clare Booth (mum)
On behalf of Monty and Harry we would love you to consider their daddy for this award.
Our beautiful boy Monty was diagnosed with retinoblastoma on 28th September 2018 at the age of two years and four months, unfortunately Monty had to have his eye removed six days later. To say it was a huge shock is an understatement – we had never heard of Rb.
My husband Phil has been my absolute rock we don’t know what we would do without him. The whole family have found Monty’s diagnosis devastating, particularly as Phil lost his nan just a few months before Monty’s diagnosis.
We feel very lucky that Monty is now cancer free. Monty has been, in Phil’s words, his “hero”. He is the bravest person we know – nothing has stopped him and he is doing so well. His big brother Harry (aged eight) is amazing too – he is so protective of his little brother.
As a family we are now putting all our efforts into fundraising. Phil is doing ten 10km runs. In just a couple of weeks he has completed his first two runs and he is also arranging a golf fundraiser with his dad. He desperately wants to show his appreciation for all the hard work CHECT and Birmingham Children’s hospital do.
Champion Dad: Chris Nash Nominated by: Olivia Nash age 3
written by Stefania Nash (mum)
My name is Olivia Nash and I am three years old. I would like to nominate my daddy for this award because he has been a rock to me, my new baby brother and to my mummy – including when my baby brother was growing bigger and bigger in mummy’s tummy.
He has been there when I needed him the most from having my diagnosis, eye removal, chemotherapy, proton beam therapy in Germany and my sleepovers with him at our local hospital. He has taken time off work to care for me alongside mummy.
Whenever i felt scared, daddy made it all okay. He showed me that it isn’t so scary and made me feel at ease and showed me i can be brave through this journey. I love my daddy and he is my best friend. He is our champion.
“I Joined Childhood Eye Cancer Trust (CHECT) for Retinoblastoma Awareness Week 2019 where I met remarkable parents with remarkable children!” Peter Dowd MP
CHECT Information and Research Manager Petra Maxwell recalls our Parliamentary Drop-In Session held during May for Retinoblastoma Awareness Week 2019.
It was with a mixture of excitement and some trepidation that Patrick and I approached Portcullis House in Westminster on the morning of Wednesday 15th May. We were there to host a Parliamentary Drop-In event, as part of World Retinoblastoma Awareness Week 2019, to engage MPs in raising awareness of Rb in their constituencies.
It was the first time CHECT had ever held an event like this. Back in December we were approached by member Hannah Matin, who works in the office of Paul Farrelly MP, to suggest we hold such an event. In her role Hannah was able to secure us a room at the centre of Westminster, and to advise us on the best way to run such an event.
So the room was booked, invitations sent out, but would anyone come?!
We shouldn’t have worried. As you know, over Easter we asked CHECT members to write to your MPs on our behalf, to share your experiences of Rb and to encourage them to attend the event.
We are so grateful to all of you who took the time to do this – it really paid off. Almost 40 MPs attended, including the Parliamentary Under Secretary of Health (Seema Kennedy), the Shadow Minister of Health (Sharon Hodgson), and the Shadow Minister for Disabled People (Marsha de Cordova). We also welcomed Jacob Rees Mogg to the event, much to the delight of teen CHECT member Christopher Payne who is a huge fan!
The four-hour event was an opportunity for MPs to meet some of our members face to face, and to hear about their experiences of Rb. So a huge thank you to everyone who gave up their time to come along and give their support:
• Hannah Matin
• Pippa, Glenn Branch and daughter Amber (age 2)
• Angharad Price
• Vicky Payne and son Christopher (age 14)
• Pippa Burrell and son Sebastian (age 3)
• Gemma Boggs (trustee)
• Alex Brebbia (trustee)
• Robert Downes (trustee)
• Amanda Moore (trustee)
In addition to chatting with CHECT members, MPs were encouraged to have their photo taken with our interactive #HaveYouCHECT banner to share on social media with suggested awareness messaging. Over a third of those who attended have done so, including Mr Mogg with his 277K Twitter followers!
We also talked to MPs about the importance of sharing information on signs and symptoms and referrals with key healthcare professionals in their constituencies, in particular GPs, health visitors and opticians. We have been in touch with everyone (both those who attended and those who were unable to attend) since the event, and a number have already confirmed they have disseminated our professional information accordingly.
And it doesn’t stop there. One MP has been in touch about issuing a press release, another has pledged to write about Rb in her column in a local paper, and another MP has offered to set up a meeting between CHECT and key health influencers in her local area.
Once again, thank you so much to all the wonderful CHECT members, without whom none of this would have happened: from Hannah’s original idea, to everyone who contacted their local MPs, to those who came along to support us. We will keep you posted on the outcomes!
Our thanks to Paul Farrelly MP and Jeremy Lefroy MP who sponsored the event on behalf of CHECT.
List of attendees (in no particular order):
Paul Farrelly (Newcastle-Under-Lyme)
Seema Kennedy (Parliamentary Under Secretary of State for Health)
Jack Brereton (Stoke on Trent)
Dr David Drew (Stroud)
Alison Thewliss (Glasgow Central)
Rafael Kochaj (Office of Bill Wiggin MP, North Herefordshire)
Stephen Lloyd (Eastbourne)
Stephen Pound (Ealing North)
Sharon Hodgson (Shadow Minister for Public Health, Washington and Sunderland West)
Eleanor Smith (Wolverhampton South West)
Peter Dowd (Bootle)
Jacob Rees Mogg (North East Somerset)
Paula Sheriff (Dewsbury)
Barry Gardiner (Brent North)
Wera Hobhouse (Bath)
Sir David Amess (Southend West)
Sir Christopher Chope (Christchurch)
Nic Dakin (Scunthorpe)
Mark Tami (Alyn and Deeside)
Marcus Jones (Nuneaton)
Mims Davies (Eastleigh) – assistant Jed stayed long time
Sir Desmond Swayne (New Forest West)
Preet Gill MP (Birmingham Edgebaston)
Heather Wheeler (South Derbyshire)
Damien Moore (Southport)
Mark Pritchard (The Wrekin)
Jo Stevens (Cardiff Central) couldn’t attend but sent her assistant who promised to help sending details to her constituency staff to pass on to HCPs in their area
Mary Glindon (North Tyneside)
Andrew Gwynne (Denton & Reddish)
Mike Penning (Hemel Hempstead) – took families into Parliament
Chris Grayling (Epsom & Ewell)
Stuart McDonald (Cumbernauld, Kilsyth and Kirkintilloch East)
Rupa Huq (Ealing Central and Acton)
Mel Stride (Central Devon) – couldn’t attend but assistant Mike Knuckey came instead
Anna McMorrin (Cardiff North)
Marsha de Cordova (Shadow Minister for Disabled People)
John Baron (Basildon and Billericay)
“I expected the doctor to say that I was another worried over-bearing mother, panicking over nothing” – the words of a mother who found out the devastating news that her baby boy had cancer.
Eight-month-old Husayn was standing and leaping over the sofa arm in the living room one afternoon when his mother Parveen noticed a strange glow in one of his eyes.
Parveen Rizwan from Birmingham said: “At first I thought nothing of it. I thought it was a combination of the sun shining in through the window and the glow from the TV. It was only when my husband also mentioned seeing something in his eye a couple of days later that we knew something could be wrong.”
Her husband Rizwan Googled the symptoms and retinoblastoma, a rare childhood eye cancer which affects just one child in the UK per week, came up as a possibility.
Parveen said: “To be honest, even at that point, we really thought it wouldn’t turn out to be anything serious. However, for peace of mind, we thought we would mention it at the GP appointment we had coming up in a couple of weeks.”
Husayn’s eyes were examined by their GP, who stated that she needed to make an urgent referral, knowing that the symptoms could indicate retinoblastoma.
The following day at the Birmingham Midland Eye Centre, a specialist confirmed that Husayn had very little, if any, vision in his right eye.
Parveen said: “We were obviously shocked – we had no reason to suspect that he had any problems with his vision – he seemed like a normal baby, playing and doing normal baby things. He never missed a thing, picked everything he wanted and held anything given to him. Even his pincer grips were spot on. Little did we know that he’d already adapted to life with vision in just one eye.”
Husayn was seen at Birmingham Children’s Hospital two days later for further intensive tests under general anaesthetic. It was there that they confirmed Husayn’s devastating cancer diagnosis in both of his eyes, leaving him with just 10% vision in his most affected eye.
Parveen said: “I just broke down. Holding on to my husband so tightly, who was trying so hard to be strong for both of us, we listened as the diagnosis of retinoblastoma was relayed to us.
“Tears rolled down my cheeks. It seemed so surreal. How could this be true? When you can’t see something physically wrong, and they seem fine in themselves, you can’t accept that your little baby is sick. ‘When?’, ‘How?’, ‘Why?’ were just some of the questions which flooded my mind at the time, but ‘Will my child be ok?’ was the only question which needed to be answered.
“Although Rizwan had been so strong up until now, he broke down when he saw Husayn in the recovery room, still groggy from the anaesthetic. I never have seen my husband cry since his mother died three years ago. This broke our hearts immensely. I still can’t come to terms with it. Even now, it doesn’t feel real.”
Thankfully, there was a chance that both of Husayn’s eyes could still be saved. His left eye had laser treatment straight away. However, an intensive course of chemo of was required to shrink the tumours in his right eye.
Thanks to a combination of patching to improve the sight in his weaker eye and a good response to chemo, Parveen says that Husayn’s sight in his poorly eye has vastly improved – amazingly by 70% a few months ago and he now has equal vision in both eyes.
Having finished his chemo, now 20 month old Husayn has ongoing laser treatment every three-four weeks.
“He’s on the edge of the cancer now. Throughout everything he’s been our strong little fighter – he still comes up fighting and definitely shows us he is boss. I’m absolutely over the moon. For the success of treatment and the care provided by all the staff involved in Husyan’s treatment and aftercare at Birmingham Children’s Hospital. They are tremendous. We can’t thank them enough. Absolutely wonderful team – thank you so much.”
Patrick Tonks, Chief Executive of the Childhood Eye Cancer Trust, said: “Retinoblastoma is rare, with around 50 cases diagnosed in the UK each year. In addition to this, the symptoms are very subtle and children often seem well in themselves which makes it hard to diagnose.
“Currently half of babies and children diagnosed lose an eye to save their life. Urgent referral and early diagnosis can help save a child’s sight, eyes and life.
“12-18 May is World Retinoblastoma Awareness Week and we are urging all parents to be aware of the symptoms and to have their child checked out if they have any concerns at all – the most common signs are a white glow in the eye which visible in certain lighting or a flash photo, or a squint (lazy eye).”
NOTES TO EDITORS
1. The Childhood Eye Cancer Trust (CHECT) is a UK charity dedicated to helping people affected by retinoblastoma. It:
• Provides ongoing support and information to families and individuals.
• Funds research into the prevention and treatment of retinoblastoma.
• Raises awareness among health professionals and the public.
• Influences policy to improve services for patients.
2. Retinoblastoma is a rare and aggressive form of eye cancer that affects babies and young children, mainly under the age of six. On average, around round 40-50 cases are diagnosed a year in the UK – or one child a week. It represents 3% of all childhood cancers and 10% of cancers in babies under the age of one in the UK.
3. Around 98% of children survive retinoblastoma in the UK but early diagnosis is crucial in order to save a child’s eyes, sight and life. The most common symptoms are a white glow in a child’s eye or pupil in dim lighting or when a photo is taken using a flash, and a squint.
4. CHECT has been a registered charity since 1987 and was formerly known as the Retinoblastoma Society.
5. For more information on CHECT or retinoblastoma (also known as Rb), including signs and symptoms, diagnosis, the red reflex test and treatment options, visit www.chect.org.uk.
Cambridge student Dominic Bielby shares his story on how having an artificial eye has not held him back. Instead, he found that embracing his uniqueness can be used to his advantage when making new friends.
My very first memory is sitting up in a hospital bed, watching the trolleys and patients scurry past me in a paediatric ward. After a while my own bed is wheeled away into a room nearby, a clinical green glow awash on the walls as a breathing mask is placed over my face. With the taste of anaesthetic I can still sense today I drift to sleep. It was just one of the many check-ups and follow-ons I received after I had my left eye removed, back when I was just two, in order to treat my retinoblastoma.
Back then I had absolutely no idea what was in store for me in the future. Now, thanks to some hard work and a bit of luck, I’m studying Law as an undergraduate at the University of Cambridge. For me, it’s a dream come true and being an Rb survivor never held me back.
I’ve never seen my artificial eye as a disability (and even if I could, I wouldn’t be able to see it all!) but rather as something unique about my person. One of the main fears that comes with having an artificial eye is social interaction, that feeling that somehow you won’t fit in because your eye contact is slightly off or your face is not quite symmetrical. That idea can take root, especially when having an artificial eye is relatively rare means there’s no-one to tell you what it’s been like for them. When it comes to a major change like heading to university for the first time that fear can seem even more pronounced.
In my experience, all through school and now, at the start of university, having an artificial eye has never been an obstacle to making friends and being social – in fact I’ve found it advantageous more than anything. I can guarantee that nothing spices up the blandness of yet another, ‘What’s your name, where are you from and give us an interesting fact about yourself!” than casually dropping in the fact that you have an artificial eye. As an icebreaker, it’s unmatched.
But whimsicality aside, in all my time as a student, even in the daunting setting of starting as a fresher at university, not once have I been met with anything other than interest and intriguing questions when my artificial eye or my Rb has been brought up. It has never been anything other than a point of interest and has never stopped me from making friends and going out.
It is quite odd when your best friend takes a pause and all of a sudden comes out with, “You know, I forgot you have a fake eye!”. In some ways I forget myself sometimes because, at the end of the day, your social life and your friendships aren’t defined by your Rb or your artificial eye – what matters is your own personality. Having an artificial eye doesn’t make you uninteresting or unwanted, in fact, I’ve found it to be my own special way to connect with new people and make new friends. When life gives you lemons, you make lemonade, and having an artificial eye is a great way to spark a chat with someone – before you know it, you’re friends.
From an academic perspective, having an artificial eye hasn’t prevented me getting my grades or passing my exams. Of course there’s no reason for it to, but with all the other pressures of teenage life and anxieties which come from having an artificial eye, it may feel like reaching your full academic potential is impossible.
In spite of having been diagnosed with Rb seventeen years ago, and in spite of my artificial eye and all the pressures and hardships and problems that came with that – for myself and my family – I was able to get myself a place at one of the best universities in the country. If I can do that as a survivor of Rb and with my artificial eye, there’s nothing to stop the same from holding anyone else back.
UPDATE: Celebrating his uniqueness one step further – and to mark the end of his freshman year – Dominic has recently received an artificial eye painted to reflect his Corpus Christi College crest.
Dominic set up a Go Fund Me page to raise money for the prosthetic eye – which he has personally matched and donated to CHECT. He’s promised donors that he would wear it to college events, tours and maybe even interviews too!
This short programme, presented by Shane Richie, gives a brilliant insight into the journeys of some of our families affected by retinoblastoma, the work that we do and why supporting Childhood Eye Cancer Trust is incredibly important.
Thank you so much to Shane Richie for giving up his time to do a fantastic job of presenting our appeal, and also to the families, teenagers and little ones who all took part. A huge thank you to everyone who watched and donated.
Originally aired on Sunday 24th March 2019 on BBC1.
BBC Lifeline Appeal - Childhood Eye Cancer Trust - YouTube
This World Retinoblastoma Awareness Week 2019 (12th-18th May), the Childhood Eye Cancer Trust is holding a drop-in event at Westminster on Wednesday 15th May.
We are inviting MPs to come along to meet parents of children and adults affected by Rb, to hear about their journeys to diagnosis and the longer term impact of the condition. We will also be asking them to complete two easy actions to help raise awareness of the signs and symptoms of retinoblastoma with parents and healthcare professionals in their constituencies.
We need your help!
We have invited all UK MPs to our event, but we know it will be so much more effective if their own constituency members ask them to attend. We have therefore drafted a template letter which you can personalise and send to your MP.
If you are a parent, you could even ask your child to draw an invitation to go with your letter to make it stand out even more!
This is the first time that CHECT has held an event like this, and we want to be able to speak to as many MPs as possible, so we would be really grateful if you could take a few minutes to help us in this way.