My God-daughter, Anusha, runs a marathon every day.
Anusha is five years old and has a very rare and complex genetic disorder called Prader-Willi Syndrome (PWS).
Kids with Prader-Willi have very low muscle tone
Anusha is five, yet walking for more than five minutes is a challenge for her. As a baby she did not have the strength to suck or swallow and needed to be fed via a tube. She first sat without support at one; she crawled at two and started walking at three. She still lacks the muscle strength to run, climb, kick a ball, jump or skip. But with the help of her therapists, she keeps on training. And one day she’ll do them all.
Kids with Prader-Willi have learning disabilities
Anusha is only just beginning to speak in sentences. Colours and shapes are a challenge. She struggles to focus. But, she smiles as she recalls who sang that special song on holiday two years ago. She knows who’s putting her to bed the day after tomorrow. She knows the name of every doctor in the surgery. If she needs her daily injection, she’ll remind us..
Kids with Prader-Willi have an excessive appetite – they fall prey to obesity from an early age
Anusha's brain does not tell her stomach that it's full. In addition, her metabolism is slow, so her weight is watched very carefully. She can’t have chocolate, chips or sweets. Her diet is low-sugar, low-fat, low fun. But she doesn't ask for chocolate or chips or sweets. Instead, she laps up her lentils, quaffs her quinoa and craves crumble (melon with low fat yoghurt and muesli). What a little star.
Kids with Prader-Willi are emotionally instable
Anusha 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. If a friend pops in out of the blue, she’s over the moon. She chats to everyone she meets: the lady in the coffee-shop, the fishmonger, the librarian. She wins their affections and sings their praise.
And there are plenty of other symptoms…but kids like Anusha, are amazing
For now, Anusha 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. Grandparents. Brothers. Aunties and Uncles. Cousins. Godparents. Friends. Dogs. The fishmonger. How to love. How to laugh. How to be happy. How to make people smile.
So on May 23 when things start getting tough, when I hit that physical and mental wall, I'll be thinking of Anusha. I'll be thinking about her beautiful eyes, her cheeky smile, her ability to keep on going and that immeasurable capacity for love. I'll also be thinking about her amazing parents who refuse to let anything stop Anusha leading a full and active life.
Prader-Willi has no cure, but with help, care and the right intervention, the various symptoms can be managed and lives can be dramatically improved. I am running to help the Prader-Willi Syndrome Association, UK to help children like Anusha, and families like hers, to live with and manage this syndrome. As PWS is so very rare, the association is small and under-resourced. Every penny you give will have a huge impact.
Thank you for your support.
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