From diagnosis to independence – Mum Cheryl’s story

Lily was diagnosed with Coloboma, an underdevelopment of the eye that happens in the womb, at the age of three. It means she is blind in her right eye and has no upper vision in her left. Here, mum Cheryl explains what a shock it was for the family and how they came to terms with the diagnosis and how she wants to give back to help other families by running this year’s RSBC Blindfold Run.

The diagnosis

“On the 12th of September 2015 we as a family received some news that would change our future forever. I sat at hospital with my daughter Lily waiting for a test on her eyes as we thought she had a ‘lazy eye’. We had the usual tests, then she was asked to tell us what the pictures were on the back wall. She said she couldn’t see them – it was Peppa Pig and Winnie the Pooh, she knew who they were! – the realisation that she really couldn’t see them started sinking in.

“There is nothing that can be done. Lily has been born with Coloboma”

“Once in with the consultant – he told me that Lily is blind in her right eye and has no upper vision in her left eye. Me being me – never knocked down for long – asked, “how do we fix this?”

“The next response totally came as a blow. “There is nothing that can be done. Lily has been born with Coloboma”. I was so shocked. She had met all her milestones, was never afraid of doing anything. Surely it was the wrong diagnosis? I walked into that hospital with a fully sighted girl and was leaving with a partially sighted one. How do you get your head around that? I had to go home and tell my husband exactly that. I had so many questions and so many emotions.”

Three years later

“How far our beautiful, clever and truly inspirational little Lily has come. Our family unit is as strong as ever and as a family we have supported Lily and each other every step of the way. She smiles all the time which eases the heartache on those dark days.

“It’s not been an easy journey and there have been many ups and downs. Also times of grief for the loss of all those dreams you had for the child you thought you had when she was first placed in your arms. We don’t dwell on the downs – we still see those dreams we had for her- albeit they will be achieved differently. Lily has a way of making those dreams a reality with a smile, love and pride.”

“We didn’t choose this journey, but we sure do love our tour guide.”

“We have good support in place for her, from regular hospital check-ups every three months, and solid support from a Qualified Teacher for Children with Visual Impairments, or QTVI, who supports Lily in her mainstream educational setting. Lily was introduced to the Long Cane which she has named ‘Strawberry’, not long after her diagnosis. She travels confidently and a lot more independently than she ever would without ‘Strawberry’.

“Lily’s disability has given her the ability to see the world with her heart – and helped us to share that vision too. We didn’t choose this journey, but we sure do love our tour guide.”

Why RSBC?

“Thank you for reading my story. Hopefully this will now give you a little insight into why it is so important to me to raise funds for other families like ours to get the help and support they need from the Royal Society for Blind Children”

Our Family Support Service is on hand for any families going through something similar to Cheryl, Lily, and family. We can provide practical and emotional support at every stage of your family’s experience, whether you’ve recently found out about your child’s sight condition, or if their sight loss is part of other needs.

By running this year’s Blindfold Run, you can help us be there for more families.

P.S…

“I also want to say a massive thank you to my running partner Amanda – without her unconditional support and commitment this wouldn’t have been possible. To cross the finish line with such an inspirational and selfless person by my side will fill me with pride, not only for our achievement on the day, but for crossing it with a now very special and remarkable friend.”