Jack’s Family Story by his Mum Jacqueline

Our son Jack has a rare genetic brain disorder called Lissencephaly, which means his brain is completely smooth.

Our Story of Archway

As a result, Jack requires total care and support with every aspect of his life. Jack can’t speak or move by himself and is wheelchair bound. Jack is fed by a tube and has epilepsy. Despite all of this Jack is a happy young man.

Having Jack in the family means that sometimes plans need to be changed at the last minute. It is also very difficult to plan outings in advance. Even when we do go out half the house has to come with us – various medications, equipment and so on.

Respite has been an important part of Jack and his family’s support over the last 10 years and Jack’s Mum encourages other families in the same situation to use the respite care that has helped her family.

Archway is a lifeline for our family. Jack requires 24-hour care so it’s a huge relief to know there are specially trained staff, who we know and trust, on hand to help whenever we need.

"Jack is really quite medically complex. When he goes to Archway, he goes with half the house – there’s a huge amount of stuff. It’s a very anxiety-provoking situation to be putting him in someone else’s care."

Life is very routine and unspontaneous for us and being able to have respite is amazing. We now know that even if things have been very tiring and hard at home there is a break just around the corner. We can go away for a few days on our own or on holiday and spend uninterrupted time with our other children. We can organise activities that would be impossible if we had Jack with us. And although he can’t tell me I think Jack enjoys a break from us too!

Archway allows us to experience “normal” life for short periods of time, catch up on some sleep and given us the ability to do spontaneous things every now and then. We know and trust the staff giving us the confidence to enjoy our times whilst knowing Jack is happy and well cared for. As time has gone on we have learned to enjoy our respite time more and more. Archway have made the hard times easier to bear as we know that we will get a break.


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