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Most of you will know that in 2005 Hermione was diagnosed with the incurable chromasomal abnormality, Prader-Willi Syndrome
Hermione is six, yet walking for more than five minutes is a challenge for her. She first sat without support at one; she crawled at 18 months and started walking at 27 months. She still lacks the muscle strength to climb or kick a ball. But with the help of her therapists, she keeps on trying. And one day she’ll do them all.
Kids with Prader-Willi have learning disabilities
Hermione has trouble with attention, and concepts are gobble de gook to her. She struggles to focus. But, she smiles as she recalls the time the horse she was riding at Bockets farm kept stopping to eat the grass two years ago or the time she got water in her wellies in Cornwall last summer. If we’ve forgotten her daily injection ('bejection' as she calls it!), she reminds us.
Kids with Prader-Willi have an excessive appetite – they fall prey to obesity from an early age
Hermione's brain does not tell her stomach that it's full. In addition, her metabolism is slow, so we need to watch her weight very carefully. She can’t have chocolate, chips or sweets. Her diet is low-sugar, low-fat, low fun. But she sticks to her 900 calorie a day diet without complaining and even makes sure she isn't having too much to eat by saying 'if I have that I won't pop will I?' She thinks chocolate will give her a nose bleed and that's why she avoids it.
Kids with Prader-Willi are emotionally instable
Hermione gets frustrated. She gets anxious and distressed. If her routine is changed, if she is misunderstood, or if she's tired (and she tires more easily than her peers), she gets very emotional and struggles to calm down. But she's got a great sense of humour and is incredibly loving. She dislikes change but adores people, no matter how inconsistent they are. She chats to everyone she meet and adores the mums at school, the verger at church, and the builders working on our garden. She wins their affections and charms them all.
And there are plenty of other symptoms…but kids like Hermione, are amazing
For now, Hermione doesn’t mind that other children take for granted the things she finds so tough – things like running, hopping, skipping and jumping. Things like putting on their shoes, washing their hands or drawing a picture. Things like chatting with their friends, or telling their parents what they need. One day, she’ll do all these things too. And she knows what’s most important in life. Brothers, sisters. Aunties and Uncles. Cousins. Godparents. Friends. How to love. How to laugh. How to be happy. How to make people smile.
So despite what trials and tribulations we have been going through we keep thinking of Hermione, about her beautiful eyes, her cheeky smile, her ability to keep on going and that immeasurable capacity for love. We had a terrible 2009 with the death of my father and various other nasty situations and health scares. So we didn't have a 40th birthday party for me and Mike but as you would have been invited and would have maybe bought a pressie, bought a bottle of wine, paid for a babysitter or booked a cab to get to the party, would you consider giving some of that money (however little) to the Prader Will Syndrome Association to help children like Hermione. Thank you.
