CHERYL'S STORY

On the 12th of September 2015 we as a family received some news that would change our families future forever. I sat at hospital with Lily (my daughter) waiting for a test on her eyes as we thought she had a 'lazy eye' and would need patches. We went in to have the usual tests of 'follow this light and what's this picture of?' Then she was asked to tell us what the pictures were on the back wall. She said she couldn't see them, I mean it was Peppa Pig and Winnie the Pooh of course she could tell who they were? Realisation that no she really couldn't see them started sinking in. A little concerned by now as they wouldn't let us go home without seeing the consultant first. At this point I thought she must need glasses and they wanted to get her sorted there and then. How wrong was I? Once in with the consultant he did lots of tests and shone lots of different lights into her eyes. She was as good as anything, didn't complain or ask what all the fuss was about. It was then that the consultant told me that Lily is blind in her right eye and has no upper vision in her left eye. So me being me, never knocked down for long, asked 'okay, how do we fix this?' The next response totally came as a blow. "There is nothing that can be done Mrs Coaton, Lily has been born with Coloboma which is an underdevelopment of the eye and unfortunately it affects both of Lily's eyes resulting in her being partially sighted’. I broke down, what else could I do? I was so shocked. She met all her milestones, never was afraid of doing anything, didn't show any signs of being blind. She was 2 years old nearly 3 so how could we have not known? I mean basically they are saying she sees through only half an eye? Is that even possible? 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. So many questions and so many emotions. 

Well that was 3 years ago and 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. We have good support in place for her from regular hospital check ups every 3 months to help maintain what little sight she has and solid support from an individual Teacher for Children with Visual Impairments 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 aged 3 years old. Not many children in the Uk get a Long Cane before the age of 7 years so Lily would have been one of the youngest and may well still be at the current age of 5 years old. Without a doubt Lily being introduced to her Long Cane at such a young age has given Lily the confidence to use ‘Strawberry’ as her eyes when out and about. She travels confidently and a lot more independently than she ever would without ‘Strawberry’. 

It’s not been an easy journey and there have been many ups and downs. Times of frustration, tears, disbelief in others attitudes and ignorance and also grief for that 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 as a family could have let the knock backs beat us but we look at Lily that same baby girl that was placed in our arms and we still see those dreams we had for her albeit they will be achieved differently. We know those dreams for her won’t just be met they will be exceeded. She will find it harder than her peers but her disability won’t determine who she is. Lily has a way of making those dreams a reality with a smile, love and pride. She has brought us so much more joy and happiness than we could have ever imagined from that first day of her diagnosis. 

Lily is now registered as partially sighted/sight impaired and her future is uncertain for her sight as it could and is likely to deteriorate further, but we know, whatever happens we have good solid foundations in place and a family that will love and support her, always. She inspires us and others everyday and she doesn't let anything beat her. She may do some things differently or things may take her a little longer but she always finds a way with a smile on her face.

 Lily’s disability has given her the ability to see the world with her heart and helped us to share that vision too. We never chose this journey but we sure do love our tour guide❤️🌟💕

Thank you for reading my story and 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. Currently in Lincolnshire RSBC estimate there are 421 families with Visually Impaired Children but only 2 families are currently being supported by them and funds are desperately needed to continue to reach more. It costs £200 a year per family to help achieve this support so we have pledged a £400 target which will mean we will have helped one family each. I personally know Lincolnshire needs placing firmly on the map when it comes to supporting Blind or Visually Impaired people, so for us to be doing this 5km run it will hopefully help to fund more families in our own County and it will raise awareness for Lincolnshire. It is a County I am proud to be part of, so to be able to represent Lincolnshire to help provide support for others in it, is a reward in itself.

I also want to say a massive thank you to Amanda because without her unconditional support and commitment this wouldn't have been possible. She guides me blindfolded and I guide her blindfolded which has led to real trust and a good bond between us. To have no connection whatsoever to this charity other than being my weekly running partner says alot about Amanda as a person. To cross the finish line with such an Inspirational and Selfless person by my side will not only fill me with Pride for our achievement on the day but for crossing it with a now Very Special and Remarkable Friend.