When Mel fell pregnant with her first child in 2008, she and her partner Sean were excited. They both had good jobs – Mel worked in recruitment, while Sean was a chef in a top London restaurant. They were engaged to be married and saving to buy a house. Mel had a normal pregnancy and labour and the first six months after Kristian was born were spent in the usual whirlwind of feeding, play dates and coping on broken sleep.

However, things changed after Mel noticed Kristian’s head drop suddenly and strange red bumps appeared on his forehead. She booked a doctor’s appointment immediately but, before she even got to see him, her once happy, smiley son had changed beyond recognition. She said it was like he had been switched off.

Hospital appointments and tests followed to find out what was wrong with Kristian. By this time he was having hundreds of seizures a day and was on a cocktail of drugs. Then, when he was 18 months old, Kristian was diagnosed with Lennox-Gastaut Syndrome, a rare form of epilepsy where seizures can be non-stop. He had to wear a helmet and the family home had to be padded to stop him injuring himself.

I was getting no sleep and very little help. Sean was working long hours to support us financially. I had to cope on my own and it felt very isolating. Gradually we stopped being invited to things and some friends dropped away, probably embarrassed that their child was developing normally and Kristian wasn’t. I told work that I would not be returning and became a full time carer.

Mel was referred to Haven House by staff at Great Ormond Street Hospital, after they realised that Mel desperately needed some respite from the 24/7 demands of looking after her son.

Kristian has now been attending Haven House for nearly six years now. As well as having respite care, he also uses the toy home loan service where he can experiment with specialist toys that are often very expensive to buy.

I know Kristian enjoys himself when he is at Haven House and it gives me the chance to see friends and family or sometimes just switch off and have a good night’s sleep.

The hospice has also enabled her to meet mums who have children with life-limiting or life-threatening conditions. This is very important to her as she says:

Although I have good friends, with the best will in the world, they can’t really understand what I am going through. The mums I have met at Haven House are able to say the right things and know when not to say anything.

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