April saw a very powerful advocacy and support campaign by a very small number of passionate parents and charities. I am dedicating this month?s round up to them, the Undiagnosed.
You can watch the official video produced by SWAN UK for the day, Undiagnosed, here:
This is how Alison Bloomer from Complicated Gorgeousness began her powerful piece What Can I Tell You About Life with an Undiagnosed Child? which featured on the Huffington Post this month.
On Friday 24 April, Undiagnosed Children?s Day takes place. The aim is to raise awareness of undiagnosed genetic conditions and SWAN UK, the charity that offers support and information to families of children affected by these conditions.
What could I tell you about this awareness day and the children it supports? What could I write that would give you a sense of what it is like to have a child living in the unknown? That would make you stand still for a second in your busy day and hear about our children? What could I tell you about my boy ? just one of the 6,000 disabled children that are born each year with a genetic condition that will remain undiagnosed?
Katherine Kowalski who writes Orange This Way also dedicates a post to Undiagnosed Children?s Day. She has a child with complex disabilities and epilepsy. She takes an alternative look at the work of the charity, thinking of all those in the future who might need their support, but are as yet, unaware. In Undiagnosed Children?s Day isn?t Just for Us, she writes:
But I want to explain why this isn?t just a day for us, and for families like ours. Really it?s for everyone else.
For future parents, grandparents, midwives, GPs, brothers, sisters and friends. Because no-one expects their lives to get so complicated, but having an undiagnosed child is so much more common than you might think. And knowing what to do, and where to turn, if it happens to you or someone you know, can make all the difference.
Featured on The Long Chain, A Davey writes The Wobble, A Post for Undiagnosed Children?s Day is a beautiful and honest piece that outlines how difficult the challenges of not having a diagnosis for your child can be. It also brings sharply into focus just how vital a good charity is in offering support to its members. I?m sure some of the following thoughts have tumbled through your minds?
?What does he mean when he cries??
?He never does anything but cry.?
?Does he like it when we play with him??
?Can he see me??
?Does he love me??
?Does he know who I am??
Perhaps the most exciting news, launched on the awareness day, was that the world?s first Undiagnosed Children?s Liaison Nurse is to begin at Great Ormond Street Hospital. The post was thought up by inspirational and tireless Mum of SWAN, Renata Blower, of Just Bring the Chocolate fame. She has spent a year gaining funding from the Roald Dahl?s Marvellous Children?s Charity and negotiating with GOSH, and the nurse is due to begin in the new year, meaning that families without a diagnosis will not feel so alone and isolated during their often lengthy hospital stays. Renata hopes the role will be picked up by other hospitals in due course. She has certainly proved her mantra below.
You never change things by fighting the existing reality. To change something, build a new model that makes the existing model obsolete. ? Richard Buckminster Fuller
You can read more about the scoop in Renata?s Post World?s First Specialist Nurse for Undiagnosed Children and also in the Telegraph article that broke the news The Illness so Rare it Has No Name.
Please do link your SEND posts to the link below, and find me on Twitter @DownsSideUp to share your news. You can also use the hashtag #SENDBritmums or contact me via Downs Side Up
About Hayley Goleniowska
A former language teacher and voice-over artist, Hayley is now the Mum of two gorgeous girls, the youngest of whom, Natty, has Down?s Syndrome. She blogs, speaks and writes articles on the subject for all who will read or listen. Through Downs Side Up she aims to both offer support and encouragement to new families with a diagnosis, and gently change perceptions of Down?s Syndrome from within hearts through beautiful words and photos. Her daughter Natty is a clothing model and an amazing ambassador for children with disabilities everywhere. She has appeared in The Sun, Mail Online, Bella Magazine and on ITV Daybreak. You can find Hayley on Twitter, Facebook and Pinterest.