A place for special needs families to meet, talk and break down life's barriers
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Real life stories, issues and experiences of day to day life by parents and healthcare professionals.
I love when the clocks go forward, the weather is warmer and the nights lighter,…
by Miriam Gwynne on 18th June, 2018
Perhaps never before has humanity lived in such a self-centred, self-obsessed, self-serving,…
by Mark Arnold on 18th June, 2018
I am a bit of a plant geek.
by Jane Scott on 26th April, 2018
Talynn Gurganus was born at 35 weeks on January 27, 2014.
by Guest Bloggers on 29th March, 2018
Officially, a disease is classed as rare if it affects fewer than 1 in 2,000 people.
by Guest Bloggers on 27th February, 2018
It’s funny how one day a year we are supposed to shout from the rooftops about…
by Ger Smyth on 23rd February, 2018
This month we are celebrating Rare Disease Day.
by Rebecca Shayler-Adams on 23rd February, 2018
I could feel the blood rushing to my head. I knew I was the center of attention,…
by Ger Smyth on 9th February, 2018
He drops his bag by the sitting room door. I ask how his day was. I generally get…
by Ger Smyth on 25th January, 2018
It’s the other way around for most people but we are not most people.
by Ger Smyth on 12th January, 2018
There are many milestones we picture once we have children.
by Ger Smyth on 8th December, 2017
I have been thinking lately about a few of things I had thought after I gave birth…
by Ger Smyth on 13th June, 2017
I know you are doing a wonderful job. My child goes to school happy most days and…
by Miriam Gwynne on 29th May, 2017
We started the process months ago.We talked about it.
by Ger Smyth on 22nd May, 2017
We’ve had it for almost two years now. At first it was daunting; going out…
by Ger Smyth on 16th May, 2017
It’s very daunting when a member of your family is diagnosed with a rare disease,…
by Jodie Eaton on 24th February, 2017
Five minutes after the crowd in The Beverly Hilton ended their standing ovation,…
by taleS froM the trencheS on 10th January, 2017
by Ger Smyth on 9th January, 2017
I vividly remember a conversation I had with a friend when our son started physical…
by Melissa Schlemmer on 5th December, 2016
I have a snap shot memory.
by Sam Bowen on 3rd February, 2016
“It’s OK Mum” I whisper, “She’s real” but even…
by Sam Bowen on 31st August, 2015
At the St. Johns Hotel in Solihull, preparations are being made for the 2015 Smith-Magenis…
by taleS froM the trencheS on 26th April, 2015
I stepped out of the paediatric intensive care unit for a breath of fresh air.
by Erika Fässler-Nelson on 16th March, 2015
You could be forgiven for thinking ‘Why us?’ if your child is diagnosed…
by Firefly Community on 27th February, 2015
My husband, Charlie searched through his wallet and pulled out our son’s kindergarten…
by taleS froM the trencheS on 21st February, 2015
To help raise awareness of Angelman Syndrome, The Angelman Syndrome Foundation has…
by Firefly Community on 15th February, 2015
I promised myself I wouldn’t be like them. Those moms with a chip on their…
by taleS froM the trencheS on 8th February, 2015
Our journey with Smith Magenis Syndrome “Don’t wipe your hands on the…
by taleS froM the trencheS on 17th November, 2014