Ashley is a beautiful 18-year-old girl with Rett Syndrome, a devastating neurological condition which affects communication and co-ordination.

Girls with the condition are often referred to as ‘the silent angels’ and this, says her father, Pete, is a perfect description of Ashley.

However, the truth of the matter is that caring for Ashley is hugely demanding as she is totally dependent for all her needs. She has no speech, limited mobility and co-ordination and is prone to varying degrees of epileptic fits three/four times a week which could prove to be life-threatening.

Ashley and her family have been using the services that Haven House Children’s Hospice provides since July 2005. Tracey, Ashley’s mum, explains why this help means so much to them:

Haven House has been our second home since Ashley was five years old. The staff are like an extension of our family and without the care and support they have given us over the years I honestly don’t know how we would have coped.

As they have three children, Tracey and Pete still have to do the normal things, like work, clean, shop and the school run. Tracey said Ashley would be happy watching films all day but she would rather she was around other people. Tracey loves the fact that the team at Haven House interact with her and look after her as she would.

Ashley really enjoys her regular visits to Haven House. She uses the multi sensory room, plays in the specially adapted playground and, during the holidays, attends music therapy sessions which she loves. She also stays overnight from time to time which enables Tracey and Pete to spend some quality time with their sons, James and Lewis. They often go out for a meal or to the cinema.

Haven House services also extend to the family. James and Lewis attend Buddies sessions (for siblings of those who attend the Hospice) which they love. They get to do things they wouldn’t necessarily do otherwise like attend a fire station and use the hoses! They are often the envy of their friends but most importantly it gives them time to mix with other children in similar circumstances to them.

Tracey said:

For me, the monthly parent coffee mornings are invaluable. Talking to others makes you realise that you are not alone and really helps you appreciate what you do have in life. I always come away from the sessions feeling positive and like a huge pressure has been lifted from my shoulders.