Definition: two girls who share the same parents


Four years ago, when Lucy was 8, she won a national award for Most Caring Child.  She was nominated by her teacher and won by unanimous vote from the board of judges.

Lucy is a Young Carer to her younger sister Sophie, who has Rett Syndrome.  This is a neurological disorder which has left her unable to walk, talk or sit unaided.  That has caused her to develop seizures, a spinal curvature and some really erratic breathing.  That has left her tube fed and on constant oxygen. Is Lucy phased by this? Not one bit.

She won this prestigious award for being an extraordinary sister.  For the hours she spends sitting with her little sister, soothing her when she’s screaming. For the way that she calmly fetches the oxygen mask and Midazolam when her sister’s having a fit. For the fact that she will sit through hours of cbeebies because we daren’t incur her sister’s wrath by changing the channel. For every story she’s ever read to her. For every feed she’s put down her tube.  Not for Lucy to be phased by the way that Rett Syndrome has rudely interrupted our family life and taken away a little girl who, before her regression, once crawled and babbled and sat up in her high chair to feed herself.

Much more than this though, is the unseen way in which Lucy’s life has changed.  She’s done her homework on the floor of the children’s ward without complaining. She’s had countless disturbed night’s sleep, watched her sister being taken off in an ambulance too many times. Has resigned herself to the fact that foreign holidays are not for her family, that every outing has to be planned around her sister.

I said at the time that if I lived to 100 I would never find the words to tell Lucy just how proud I am for the help she gives.  Or how humbled I am that I take her for granted too often. Or how pleased I am that she has developed such a kind and caring nature.  She is so much more than a sister.

It is so deserving then, that Lucy was able to pick up her award at a wonderful ceremony, attended by royalty and celebrities, in a posh London hotel. That these celebrities came up to her to ask her more about her life, and what she did to help her sister. That she was treated like a VIP, and recognised for her fundamental role in easing the burden that Rett Syndrome has placed upon her family.

Humbling really then, that her memory of the event is not the admiration of the crowd, or the realisation of just what she’d achieved, or that her quiet, caring nature had been celebrated, but the fact that she sat on Prince Harry’s knee. Twice. Not bad going for an 8 year old.

This blog is for her. My daughter Lucy, carer. So much more than a sister. A young lady of whom I am very proud.”

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