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Hi everyone, we're Jakki and Dave Murcott,
We have a young son called PJ, he has a rare condition known as Russell Silver Syndrome (RSS). This condition dramatically effects growth, one side of the body may also be smaller that the other and feeding, as with PJ, can be very difficult. In a lot of cases, an operation is necessary, where a gastric tube is fitted and parents are also quite often wrongly accused of starving their children.
Although PJ does have global delays, he is doing well and what he lacks in size he more than makes up for in personality! We're fund raising for a charity very close to our hearts, it's called The Child Growth Foundation (CGF). There are ongoing studies into the management and long term prognosis of this syndrome, which The Child Growth Foundation help to fund. Also, they have been able to give our family lots of information on the condition. Through them we have talked and made friends with other families that have children with RSS. We can't tell you how reassuring it is to read about other parents experiences and share information on this rare condition.
The CGF have information on every identifiable growth-related abnormality, CGF aim is to -
Support and encourage all persons (either children or adults) who have growth disorders, and their families, in any manner which is charitable in accordance with the law of the United Kingdom.
Promote and fund research into the causes and cure of growth disorders in children within the area of benefit and to publish the results of such research.
Educate the public in general and workers in the medical profession in particular, in the problems and difficulties encountered by those with growth disorders.
Encourage the regular monitoring of growth and development criteria by medical professionals, at all levels, and facilitate such monitoring by identifying and making available on loan or for purchase equipment suitable for the purpose.
We would like to raise awareness and give something back to The Child Growth Foundation...SO...
at 10am, Saturday, 20th, February 2010, Dave will be crawling on his hands and knees, approximately three miles around Chasewater Reservoir!!!
and in the afternoon of Saturday, 20th, February 2010, at The Cottage of Content Public House, Jakki will be having all of her hair shaved off!!!
PLEASE, PLEASE SPONSOR US, thank you...
Best wishes,
Dave, Jakki and PJ Murcott xxx
Well, we've done it!!!
Dave managed to crawl around in 5 1/2 hours, a bit blooded on the knees, but he made it!
Jakki is now bald!
Wanted to say a MASSIVE thankyou to everyone that has supported us and donated to our very worthy cause, thankyou, thankyou, thankyou xxx
