Laura Sabharwal
Laura and Arvind's page
Fundraising for Prader-Willi Syndrome Association Uk
Story
On 11th April, Arvind and Laura will be running the Paris marathon. It'll be one heck of a challenge. And that's just one marathon.
Our daughter, Anusha, runs a marathon every day.
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 we’ve forgotten her daily injection, she reminds 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 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 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 April 11th when things start getting tough, when we hit that physical and mental wall, we'll be thinking of Anusha. We'll be thinking about her beautiful eyes, her cheeky smile, her ability to keep on going and that immeasurable capacity for love.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate –we raise more, whilst saving time and cutting costs for the charity. Thank you again for your generosity.
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. We are running to help the Prader-Willi Syndrome Association, UK to help children like Anusha, and families like ours, 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 supporting us all.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate –we raise more, whilst saving time and cutting costs for the charity. Thank you again for your generosity.