Haven House has just launched its annual Christmas appeal, featuring the story of 10-year-old Dylan Torrance from Wanstead. 

Dylan has Partial Triplication 15, a chromosome disorder so rare that there are only ten recognised cases worldwide. In addition, he has a very rare form of epilepsy, where seizures can happen almost constantly.

His story, as told by his mum Janie (pictured with Dylan), has been mailed out to local residents as a way of highlighting the work that the hospice does for life-limited children and families in the area. Janie explains; ‘In 2012, we moved to the area and Dylan was referred to Haven House as he was experiencing severe seizures on a daily basis.  He once had 400 in 13 hours; every one of these is potentially life-threatening, so he needs constant care.’

Janie continues; ‘While the idea of using a hospice terrified me and my husband initially, we knew we had found somewhere safe for Dylan when we needed respite.   Without Haven House we wouldn’t have coped, everyone needs a break sometimes and that is what the wonderful staff at Haven House provides.’

The support that Janie gets from Haven House allows her to spend time with older son Callum, who Janie feels misses out because so much of the focus is naturally on her unwell child.   She also attends the monthly coffee mornings at the hospice, where parents and carers can meet up with others who are going through similar situations.  Dylan also uses the hospice’s non-clinical services such as therapeutic yoga and music therapy, which are held in the hospice’s new Holistic Care Centre.

The cost of Dylan’s care for a week’s stay is £6,622, a service which is completely free of charge to the family.  However, to continue to offer this service to families like the Torrances, Haven House needs the support of its local community to continue.  Janie explains;

‘As we approach another Christmas, I do wonder if it will be the last we spend together as a family of four. We never know what’s going to happen next and having to watch your much-loved son deteriorate before your eyes is heart-breaking. What we do know is that Haven House will be there to help us have the best possible Christmas together, just like it will be for the other 150 families they will be supporting this year.'