Founding the charity
(Transcription of press release)
A new support group
is hoping to unite parents of children with rare conditions….
The Parents Information Portal (PIP)
has been set up by Samantha Fillingham after her son George was born with Poland’s Syndrome. The condition affects one in 32,000 people and it came as a huge shock to Samantha and husband Karl, for whom George was their first baby.Samantha who lives with her family in Ashton said….
“It came completely out of the blue. Nothing was picked up during my pregnancy and we didn’t even realise anything was different until George was a couple of days old.”
Samantha noticed George’s left hand was slightly smaller than his right and two of his fingers were joined together. Doctors also discovered he was missing a chest muscle.
“It wasn’t until George was a few months old that someone mentioned Poland’s Syndrome to us.
For a year I struggled to find out anything I could about it. It was a really traumatic time for us.”
Although a very rare condition several well-known people have been diagnosed with Poland’s Syndrome including Jeremy Beadle. Now aged almost three, George has had surgery on his hand and is helping his mum to help others. Samantha said;
“George has come through the worst and has really inspired me to help other parents of children with rare syndromes. I have been helped immensely by a Poland’s Syndrome support group
but they are based in Derbyshire.We’ve been on a big journey with George and I believe parents in Tameside deserve to have their own network of support.
I really hope PIP can raise awareness of little known syndromes and point others in the right direction and empower their parental instincts.”
Source Information:
Newspaper – The Advertiser
Dated – Thursday, July 21,2011
By – Jessica Beckett