Emma Pickles

"When Emily was diagnosed with TSC our world fell apart a bit really", says Emma Pickles, mum of two, children's author and fundraiser for the TSA.

"Both my husband Mark and I felt profoundly affected by the diagnosis.  Emily was only 6 months old when I noticed her first seizure.  We were happily living in North Wales and I was feeding Emily whilst at a Welsh language class when I realised that something wasn't quite right.  Emily had stopped feeding her eyes were rolling and her right side was twitching very subtly.  We went to our Doctor who sent us immediately to the local hospital.  After a short stay at the hospital and a series of tests, along with a physical examination where Emily's Paediatrician identified the classic ash leaf de-pigmentation on her skin, he explained to us that he thought Emily had TSC as the CT scan had found characteristic growths in her brain. 

"It was such a shock to the system, we had been admitted thinking she was fitting because she was over-heating and here we were with a life-changing diagnosis".  "I honestly thought we might loose her and I remember asking my husband to bring her Christening gown to the hospital, there were lots of tears as we struggled to come to terms with what we'd been told."  "But in time and with support from our Paediatrician and the TSA we slowly adjusted to our new life".

Emma remembers one rainy day that a, now by this time pre-schooler, Emily asked her why the seagulls were "dancing" outside on the grass.  After a moment she explained to her that it was how they got their lunch sometimes and that really was the moment where what started as a special little Pickles family bedtime story was born.  Emma's husband overheard the story one night and suggested that friends and family might like to hear it too and we decided to get it published and share our little story locally.  The core of the story really paralleled the Pickles family's TSC journey because having a diagnosis so young meant Emma and Mark weren't sure how Emily would develop educationally and socially but the one thing they knew was that how ever she developed would be just fine with them and the she would find her own way in life and that they would always be there to support her.  

"We always wanted to her another child but we were scared to as we knew that TSC could be inherited as well as being sporadic, it made us wonder if either of us had passed it on to her".  After some investigation by the NHS, Emma & Mark got in touch with the TSA to see if they could help them.  It was with their assistance and that of Professor Julian Sampson that Emma & Mark were able to have MRI brain scans which confirmed that they did not have the characteristic growths and therefore did not have TSC.

And on June 7th 2013 their second child was born.

"Emily has always said she only wanted a little sister" says Emma, "but it was definitely love at first sight when she saw George.  He is her friend for life and her little partner in crime!"

"Our little story took a slight back seat whilst we adjusted to life as a family of four but we decided to set up our own little publishing company, aptly named 'Gull & Buoy Publishing', a play on our children - a girl (gull) and a boy (buoy) and our coastal life on Anglesey, North Wales".  "A dear friend of ours and very talented artist, Susannah Garrod, brought our character Sidney Seagull to life in her beautiful watercolour paintings".  

"We have always felt so much gratitude to the TSA for all their support and assistance", says Emma.  In the TSA's #TeaandSCones for TSC2017 video she explains how, without the TSA's help, she and Mark would not have had the confidence to try for another child.

Emma has completed the Great North Run and Mark had completed both the London Marathon and the Three Peaks Challenge - all to raise funds for the TSA. 

"But then , I realised that, my story 'Sidney Seagull Starts the Stomp' had this lovely subtle message about difference and diversity - it's ok to be different.  In fact it's great to be different!' says Emma.  "And so we decided that whenever a friend or family member bought a copy and said "keep the penny change" we would put that penny in a pot and donate it to the TSA at the end of the year. I was delighted to present them with a cheque for £50.00 in April of this year - those pennies certainly added up!"

Emily is now nearly 8 and thriving in mainstream school with her epilepsy well under control, while George is now 4 and doing everything he can to keep up with his, much loved, big sister.

And to date, more than 2500 copies of 'Sidney Seagull Starts the Stomp' have been sold by Emma, a further 1000 copies of her second book 'The Famous Fins of Florence Fish' and 400 copies of Emma's latest story 'The Curious Case of Claudius Crab' - the story of a tiny crab with a huge heart!

"My children love these stories - and I love the fact that we were able to support the TSA through those original local sales" says Emma.  "We would not be the family we are today without the TSA and for that I will always be profoundly grateful".

 For more details and to buy your own copy please visit www.gullandbuoy.com or visit their Facebook and Instagram pages 'Gull and Buoy Publishing'.