Leela's page

Leela Mahamdallie is raising money for Williams Syndrome Foundation
Donations cannot currently be made to this page

Virgin London Marathon 2012 · 22 April 2012 ·

The Williams Syndrome Foundation was formed in 1980 and is run by parents for parents of children with this rare condition which causes heart and kidney problems and learning difficulties. It desperately needs funds to finance its ambitious research and family support programmes which include national conventions and regional meetings.

Story

Thanks for taking the time to visit my JustGiving page.  This is Hugh's story.

 

Hugh Oliver Pritchard was born on 1 March 2009 to my sister Yasmin and my brother in law, Mike.  Hugh had a difficult early life, he was born with Williams Syndrome and a life threatening heart condition.  They tried to fix this but failed and in the process he got brain damage.  Hugh and his family spent a lot of time in hospital in his first year and even when he came home he needed intensive nursing.  Hugh is now 3 years old and against all the odds he is still with us and is doing well.  Hugh goes to nursery and he is a beautiful brother to 4 siblings and is loved by all who know him.

 

Every day is precious for Hugh and all I can say is that his parents (Yasmin and Mike) along with his brothers, sisters and all the extended family have spent so much time making sure Hugh has a normal a life as possible and guess what, he may even start to walk...!, something the doctors thought would never happen.   I could carry on writing so much about Hugh's little life.  As you can probably tell he is very special to me and this is why I am putting myself through this almighty challenge and pain because he is my absolute inspiration.

  

Williams Syndrome is a rare disorder.  Like Down's Syndrome it is caused by an abnormality in chromosomes, and shows a wide variation in ability from person to person.  It is a non-hereditary syndrome which occurs at random and can effect brain development in varying degrees, combined with some physical effects or physical problems. These range from lack of co-ordination, slight muscle weakness, possible heart defects and occasional kidney damage.

 

Hypercalcaemia, a high calcium level, is often discovered in infancy, and normal development is generally delayed.

 

Williams People have a unique pattern of emotional, physical and mental strengths and weaknesses.  For parents, teachers, and care workers, learning about this pattern can be akey to understanding a Williams person and in helping them achieve their full potential.

 

The incidence is approximately 1 in 25,000. The Foundation hears of over 75 cases a year - and this figure is rising as publicity spreads. By 2002 over 1,300 cases were known in the UK and similar organisations have now sprung up in the USA, New Zealand, Canada, Australia and most countries in Europe.

 

The Williams Syndrome Foundation is run for parents by parents. There are no paid fund-raisers and funds go directly to research and welfare, apart from minimal administrative expenses. 

 

So as you can imagine any form of contribution would be most gratefully received.

Please do come and support me on the day, it would be so nice to see some familiar faces and I will definitely need all the support I can get...!!, and to also know that your contribution is going to a very worthy cause...!

Thank you so much and wish me luck...!

Leela x

 

Donation summary

Total
£2,651.00
+ £422.25 Gift Aid
Online
£2,156.00
Offline
£495.00

Charities pay a small fee for our service. Learn more about fees