Emily's story

"...at every step of the way, when we've needed them, we've been supported and helped by the Trust"

“I knew as soon as I looked into Emily's eyes that she had Down syndrome...The hospital was very good in giving us what information they had, but a lot of it focused on what children with Down syndrome may not be able to do.

“...I think we both decided that you just have to live in the moment. You can’t second guess what their development will be like – just as you can’t with any other child. We put all of the information we’d received from the hospital in a filing cabinet and got in touch with The Down Syndrome Educational Trust. What a difference that made!

“Here the emphasis was on early intervention, on proactively encouraging the children to develop their language and reading skills. The stories and experiences of other parents, the information available, the specialists we met, were all so positive about the future of the children.

“Of course there have been challenges along the way. Emily has had heart surgery – thankfully she sailed through it; she’s had a lot of speech problems, so has needed intensive speech therapy; and like many other parents, we’ve had to fight for Emily to be accepted into mainstream education. But at every step of the way, when we’ve needed them, we’ve been supported and helped by the Trust.

“It really goes to show that with the right knowledge, information and support, you can do anything. I just wish that all parents, doctors and midwives knew about the Trust – it would make such a huge difference.”

Kim, mother of 8 year old Emily.

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