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Below you will find a collection of emotive and inspirational stories from families affected by bilateral Rb in various different ways. We are extremely grateful to our members for sharing their thoughts with us and always welcome new accounts. Email This e-mail address is being protected from spambots. You need JavaScript enabled to view it. for more information.

Charlene Williams

Charlene Williams threw herself into fundraising when her baby son was diagnosed with bilateral retinoblastoma. Charlene explains how the distraction helped her cope through treatment.

Samantha Rouse

In 2009 Samantha's baby son was soon diagnosed with bilateral retinoblastoma. Samantha tells her moving story of how they coped as their baby went through chemotherapy.

Belinda Plowman

Belinda talks openly about her situation and decision to start a family knowing that she has the heritable form of this rare condition. This is her story in her own words.

Veronica Street

Veronica's story will strike accord with a lot of parents. Her son Daniel was bullied at school. Here, she gives us her account of what happened and tells us how they coped.

Kellie Ascheri

Kellie’s son Luca will be seven this year and has had the ‘all clear’ on his first six-monthly check-up in London. It’s been a rollercoaster ride since Luca was diagnosed as a baby.

John Ramm

Drummer and father of four, John Ramm writes about leading a full and active life as someone who has lost their sight due to Rb.

Bill Cooper

As a doting grandfather, Bill struggled to come to terms with his grandson's diagnosis. His family has been through difficult times but here he explains some good has come from this.

Ann Young

Ann's grandson Joshua was diagnosed with Rb in 2001. Ann tells us, frankly and honestly, about how Rb has affected her life.

Roger Young

Roger's grandson Joshua was diagnosed with Rb in 2001. Roger shares his experiences and shows us how Rb can affect all generations.

Justine Duffy

I have a degree and volunteer for four groups. I've tackled an aerial assault course, flown in a two-seater plane and have driven around a race track. I had Rb at 13 months and am now blind.

Jo Trevett

'You can't always have what you want, can you Mum?', Kelsey told Jo Trevett, upon learning he would lose his second eye, proving he may have lost his vision but could still see a positive side.

Angie Donovan

Angie Donovan talks openly about her decisions and her reasons for using Pre-implantation Genetic Diagnosis (PGD) with her second child.

Ingrid Svarcina

Ingrid, from Austria, shares her story about her son, Florian, diagnosed with Rb in 2001. Ingrid describes the heartbreaking decisions parents face making to save their children's sight.

Jane Harrison

Jane Harrison shares her experiences of chemotherapy after her daughter, Olivia was diagnosed with Rb at only four months.

Ronnie Beard

Ronnie Beard, from Memphis, in the US, wanted to share the story of his daughter Caroline’s diagnosis and treatment and his family's heartache during those early months.

You will find more stories from our members in other areas of the My Story section.

Back to My Story