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Genetic Alliance UK
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Guest Blogs
SWAN UK trip to Sundown Adventureland
INTRODUCING: SWAN IRELAND
It’s OK to not be OK
More than carers
Cycling to Paris for SWAN UK
Wandering down a long, lonely road
Finally a diagnosis?
A marathon in a month
In a different life
Dear Doctor
Journey to diagnosis: Tilly
SWAN UK ADVENTURES
THE HOLIDAYS WITH LIMITS.
SURVIVING THE DREADED SUMMER HOLIDAYS…
Firsts
Sometimes I just don’t know who to call …
The hidden depths of the NHS
My Star of the NHS. I Salute You.
Who cares for the carers?
Bella Is My Superhero
Rarely Outspoken
Answers
Our first Christmas and New Year without Lennon
The day the world began to shrink
What should a four-year-old be?
Alternative advent: a sensory countdown to Christmas
Being a swan
A Superhero for a Brother
The Big Little Sister
Sharing our undiagnosed story with the professionals
Hospice Care Week – Changing perceptions.
The ocean’s in motion
Keeping us out
Gone camping (again)
The second drowning
An Introduction
Becoming Alex
We are the 57%
Failing
Three Little Birds
Leaves on the line, and other reasons for delay.
The Unscratchable Itch.
Back when I ‘just knew’
AN ODE TO A SPECIAL DAD
The realisation that a diagnosis doesn’t always give you answers
Answers
To the other mother…
‘There are known knowns’ …
Into the unknown: life with an #undiagnosed child
Undiagnosed: Unexpected but not unusual
Misfit
To the parent of a newly undiagnosed child
Not Knowing Why
WHAT DO SWAN MOTHERS DO? ESPECIALLY WHEN IT LOOKS LIKE NOTHING…
Undiagnosed Children’s Day Instagram Challenge – Day 2 #My Diary
Undiagnosed Children’s Day Instagram Challenge – Day 1 #selfie
WHAT WAS I THINKING? THE ROOKIE MISTAKE OF A SN PARENT.
Having a right to play?
Reality and the fear of reality
The future?
The ‘P’ word
Delivering a diagnosis
When 20 pairs of eyes are all on you
Transition (part 1)
Being undiagnosed. Was it my fault?
Neither beginning nor ending be … and other lessons
Happy You Year
Best laid plans
Friendship after loss
Blofest 16 and the SWAN UK bloggers
Worth the wait?
Dreams Really Can Come True!
Is there any help out there?
An update – Four weeks after VNS Surgery
My #TravelStories
Dear Health care professionals
Vote for me?
The invisible boy
Blue door number one
VNS – The Surgery
Summertime sadness
Waiting for VNS surgery
When is accessible not accessible?
The unexpected
Broken sweetness
Dear Mrs May
Trolley? What trolley?
The Big Build – Birmingham Style
Like a small boat on the ocean
Teamwork Is Important
IT TAKES (MORE THAN) A VILLAGE TO RAISE A CHILD (WITH AN UNDIAGNOSED GENETIC CONDITION)
This boy does bounce
Escape!
#Undiagnosed Children’s Day 2016 (the video)
Undiagnosed Children’s Day 2016: A call for coordinated care
Wonderfully Weird
On how life is just one big Uncertainty. Which isn’t always ok…
FRUSTRATION, SWEARING AND TEARS….
Past, Present, Future
Shoulda, Woulda, Coulda
Twelve months on…
Welcome to no man’s land #undiagnosed
Beans, Beans the musical fruit!
Don’t worry be happy
Slipping through the cracks
Life With The Backward Lad
LOOKING BACK, LOOKING FORWARD
Long Faces, Frayed Knots and Loose Ends
Pin a dirty nappy on the door
Living in limbo
Belong.
On how life is just one big Uncertainty. Which isn’t always ok…
Labels
Bigger, better, bolder
Out of the Box
Acceptance, the destination for 2016
Stuck in the Waiting Room
D-Day… red shoes part 2…
Put on your red shoes …
Adulting
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