Hi members

I would love to introduce my registered charity to you, Parley and thank TheBabyWebsite for this amazing support that will make such a huge difference.

Parley has been set up due to my daughter being born with a rare form of Spina Bifida and tethered cord found at birth. My family searched for information and support groups unsuccessfully which caused pain, heartbreak and our imaginations to take over. Spina Bifida is so rare now that information is so limited especially in my daughters case.

In March 2008 at 8 months old Abigail had major spinal surgery to correct her spine to un-tether her spinal cord and nerves which could have caused paralysis and worse. We were very alone with this and couldn’t talk to anyone who had been through the same procedure. Therefore I decided that I didn’t want anyone else to go through what we had as it puts a huge strain on your lives, friendships, work and day to day life functions.

The charity is a website for all 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 instant websites for specific charities and support groups without having to search the net. If you want to talk to other mums and dads 'in the same boat, then you can contact them here on TheBabyWebsite Parley Forum.

We also have stories for parents and relatives or patients who have been through similar experiences to help those to not feel alone. We have also teamed up with TheBabyWebsite to enable families to meet and talk to other families for support and information.

Abigail 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.
Please read my Baby Blog for more information or visit parleyonline.co.uk

We are also looking for parents to share their stories on our website under specific headings so please PM me with your stories if you are happy to have these publicised.

Thank you for all your support and if we only help one person, our goal has been achieved.

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I think that your charity sounds really good!

For some people out there who need help and support it is great!

Well done!

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You are a true angel hun, rare conditions have such limited support for those going through it, making what little support you can find and latch onto so vital.
So as a mum who went through hell without the support of others who knew what it was like I think you from the bottom of my heart for starting your wonderful support network xxxxx

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Hi Vic! Well done on getting all this done, and thanks to Kathryn and TBW who have helped immensley and let you have this space on the forum! xx

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We think that you are absolutely amazing to put aside your anguish to help others. Your determination and courage are an inspiration and know that you will make Parley the huge success that you've always dreamed of.

Parley is a brilliant consept for all those parents who do need some extra support x

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hello there

i think your litle girl is really sweet. i thought you may be interested in reading my own blog about my own story of spina bifida/tscs

tetheredspinalcord.wordpress.com or i have my own site at www.tetheredspinalcord.co.uk

i am now 37 years old and of course there were no scans at all while i was been "expected". to cut a very very long story short. I led a normal life until i was 31 even though i knew i had scoliosis (curvature of the spine) i started to get back pain and urinary problems when i was 31 it took 4 years to find the correct diagnosis, which was too late to save my bladder so i now have a catheter and use a wheelchair, but my life although tough is actually not so bad.

please, just take a look at my site and let me know what you think - we could perhaps do something together.

have you thought of going on facebook with your charity ?

all the best

andrea

Mummypaine, you and you're family are an inspiration to all those in need of support. Undoubtedly, THBW and it's members will help you to further your cause and support to those families that are in need of it.

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Thank you for such lovely comments and BTW its on FB Search on just Parley x x x

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