What is Parley

What is Parley
My name is Victoria and I'd like to tell you a bit about my special daughter Abigail and my charity Parley.

Abigail was born 2 years ago with a rare form of Spina Bifida and a tethered spinal cord. This was a terrific shock to Richard (my husband) and I as it was not diagnosed during the pregnancy. At the time, my family searched unsuccessfully for information and support groups. This caused us a lot of pain and heartbreak and our imaginations to take over.

Spina Bifida is so rare now that information is limited and not as accessible as it once was. This was more so in my daughter's case.

In March 2008 at 8 months old Abigail had major spinal surgery to correct her spine and un-tether her spinal cord and nerves. Without surgery this could have caused paralysis and possibly worse.
We were very alone with this and couldn't talk to anyone who had been through the same procedure.

I decided, there and then, that I didn't want anyone else to go through what we went through. We were so dismayed by the lack of information and support for parents in our position that we decided to launch a website especially for parents like us. We called it PARLEY online - an acronym for Parents And Relatives Listening & Empathising with You. We hoped to fill a knowledge gap on a variety of medical conditions so if you have a child born with or who develops a long or short term medical condition, you can go to Parley and find lots of information for specific charities and support groups without having to search all over the Net. We also have real stories written by parents, relatives or patients who have been through similar experiences as we have found that it helps people enormously when they hear of others going through the same thing as them.

We have also now teamed up with TheBabyWebsite to enable families to meet and talk to other families for support and information. A problem shared is a problem halved and all that! We have our own area on TheBabyWebsite Forum where mums, dads, relatives and patients can 'chat'.

Abigail, incidentally, has now fully recovered and if it was not for the huge scar on her back you would not know there was a problem. We still have milestones to hit but Abigail walks, talks, sings, dances, runs, jumps and climbs like any other 2 year old if not more. You can meet Abigail in my Baby Blog http://www.thebabywebsite.com/home.Mummypaine.htm .

The Parley motto is if we only help one person, our goal has been achieved.

During 2008 PARLEY organised a sponsored walk, raising £1560 - the proceeds of which were donated to Worthing Hospital Paediatric Ward. Mr. Tim Loughton MP and Shadow Minister for Children is Patron; and with his help, PARLEY have donated a
State of the Art electric cot and many Christmas gifts to Worthing Hospital. PARLEY won the community grant from Saywell International, which enabled a family with a child suffering from a life threatening illness to visit Disney in America.

During 2009 PARLEY supported the 'We Play Too' playground at Brooklands in Worthing, West Sussex, which facilitates the use of wheelchairs. April 2009 saw PARLEY host an evening of music at the Robert Woodard Academy -which raised money to put towards the publicity of PARLEY.

Parley's work continues and with your help, we can continue to make PARLEY even more successful - sponsorship, donations, ideas or volunteers will always be welcome.

Victoria Paine
November 2009

PARLEY (Parents And Relatives Listening and Empathising with You)

PARLEY has now achieved registered Charity status number 1128687

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