IT WAS set up in 2006 by a group of parents aiming to support each other through the journey of raising a child with Down's syndrome.
Now, eight years later, the charity Downright Special has expanded and grown to support more than 100 families from across East Yorkshire.
It works with parents to help them realise after a the shock of diagnosis, their children are as special and can achieve the same if not more, than a typical child.
Using special learning techniques and the latest teaching technologies, the charity makes sure the children it supports have the very best start in life they can.
Gillian Bowlas, chairwoman of the charity and one of the original parents who founded it, said: "There was a cohort of children born in 2005 and by various chances we, as parents, bumped into each other.
"There was nothing like this in Hull or the East Riding.
"We got to know each other and decided to start something up to help ourselves and help each other."
The charity, based in Bodmin Road, Bransholme, quickly grew.
Still a parent-led organisation, it is mostly made up of volunteers.
But it is not short of expertise, with youngsters attending sessions taught with the latest technologies and techniques.
It also offers visits to new parents, useful resources to lend to parents, training for schools and other agencies and social activities.
Mrs Bowlas said: "All the people who originally started Downright Special are still heavily involved.
"Our children are all eight now and we are carrying on the journey. We provide so much more now than when we started.
"There are play sessions, support to parents, we help to train teachers and teaching assistants and go into schools to help staff there."
The charity has also been heavily involved in helping shape a pack for both expectant mums who know they are having a child with Down's syndrome and parents who find out after birth.
Mrs Bowlas said: "We all thought we could have had a better experience so we have worked with the Women and Children's Hospital to make this pack which sits on the ward.
"Sometimes, I look back and I can't believe what we have achieved.
"We have come such a long way.
"We always wanted it to be a sustainable, long-term charity. We don't want it to be just about our own children, we want to help all the kids in our area and that is partly why we are really, really proud of what we have achieved.
"It is like having an extended family."
The charity gets no funding support and must survive on what it can raise through grants and donations.
Although achieving a lot, it is run on a relatively small budget of £40,000 per year.
As well as working to support children families and the community he charity aims is to dispel the myths which are still in society about Down's syndrome.
Mrs Bowlas said: "We may go into schools or go and talk to other organisations.
"We are on the phone if anyone needs us.
"It gives us the chance to talk about Down's syndrome and dispel some of the myths.
"We are trying to raise the profile of the charity and get the word out that we are here, for fundraising but also for advocacy, too.
"We work with all the services whether it is speech and language or community nursing.
"We work hard to emphasis the positive things and to make sure children have everything in place to get the best start in life.
"We have high expectations of our children."
One parent who has been supported by Downright Special is Vicky Barby, who has a son Joshua, two.
She said: "Our beautiful son Joshua was born weighing 4lb 4oz. He was so, so tiny but he was perfect and, yes, he had Down's syndrome.
"We quickly realised Joshua is just like any other child and we just needed the correct tools to teach him. I found the number for Downright Special.
"I was overwhelmed by the initial support given to me by the charity as, finally, someone knew how we felt. Downright Special has been an amazing help and without them, it would have been so much harder.
"The charity showed you everything was going to be OK, that Joshua was going to be ok. We all know how each other feels and we can share that."
Vicky has now organised a fundraising walk on Saturday to raise money for the charity.
She said: "It's now our turn as a family to support Downright Special and that is why we have organised the event in hope that more people become aware of their great work and help to provide the vital funding needed."
