Eight year old Alexa Lee won the nation’s heart when she appeared on BBC Breakfast earlier this year. Alexa and her mum Natalie were interviewed about her sight loss diagnosis, Brittle Cornea Syndrome (BCS) and how they are making their way through a long “bucket list” of experiences as Alexa’s sight continues to deteriorate. Alexa speaks with great courage and confidence about her outlook on life and how she stays positive.
Alexa was diagnosed with the rare condition in 2015 when she was three. The condition has left her with just a little sight in her right eye, which is stable for now. The problems started when Alexa was a toddler and she was showing signs of being acutely short sighted. She was referred by opticians for specialist tests at Moorfields Eye Hospital, where BCS was diagnosed.
Children born with the condition have extremely thin and fragile corneas,
which means that common accidents such as being poked in the eye or hit by a ball can rupture their eyeball. As BCS is progressive and Alexa only has a little sight remaining, her mum and dad constantly face the difficult challenge of balancing Alexa’s safety with allowing her to enjoy the same experiences as her friends.
“Alexa can’t play contact sports as that’s simply too risky, but we know we can’t wrap her in cotton wool and she must be allowed to play freely. She knows the risks and is really good about keeping her glasses on for protection.”
Natalie felt she needed emotional support to come to terms with Alexa’s condition, a process she likens to suffering bereavement, so profound were the feelings of loss and devastation.
“When we found out Alexa had BCS, I went into practical mode and didn't think about the future. Once her eye sight started to deteriorate significantly it hit me like a tonne of bricks, and I was extremely sad. I didn’t think I could ever be truly happy again. Everything had changed.”
“I contacted the Royal Society for Blind Children after a recommendation from a friend. I was interested in getting some counselling for us so I was put in touch with the Family Support Service. They have helped us talk through feelings. We feel it's important Alexa gets to speak to someone other than her parents about how she feels. We went through a phase of her having lots of angry outbursts and we felt unequipped to help her. Having specialist support from RSBC has definitely helped Alexa understand her feelings and she is much better at communicating those now. Alexa knows that she might lose the rest of her sight, so it’s really important that she can express herself and explore those difficult feelings.”
“We want our little girl to experience as many things as possible whilst she has a little sight, so that’s where the bucket list came in. We are also keen to teach her that having a disability does not hold you back. Among the things on her list, many of them already ticked off, ice skating, swimming with dolphins and meeting her favourite band Little Mix, but the list is growing all the time!”
Alexa has lots of ambitions, including becoming a teacher, singer and scientist.
“She’s a happy, confident little girl these days and sometimes I forget how little she can see. I think about how I’d like to step into her shoes, just to get a real understanding of what it’s like for her. It’s amazing how matter of fact she is about her sight loss. It's not some big scary topic now. RSBC has helped all of us get to this point. I’m extremely proud of her.”
The Royal Society for Blind Children’s Family Support Service can be on hand from the moment parents hear the news of their child’s diagnosis. The charity offers practical advice and emotional support so that parents develop the knowledge and confidence to help guide their child through sight loss and prepare them for adulthood. Their #EveryBlindChild appeal aims to raise vital funds to ensure that more families have access to this immediate support.
Text “LEARN” to 70025 to donate £5 or visit www.rsbc.org.uk
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