Dylan, aged 10, lives in Wanstead with his mum, dad and 13 year old brother Callum. He has Partial Triplication 15, a chromosome disorder so rare that there are only ten known cases worldwide. Whilst there is little known about the condition, one thing is certain - his life will be shortened.
Caring for Dylan is a 24-7 job. He was recently diagnosed with a very rare form of epilepsy where seizures can be virtually non-stop. In a particularly bad period, he had 400 in 13 hours; every one of these can be life-threatening.
As well as his major conditions, he is wheelchair dependent, has poor fine motor skills, has no short-term memory and often suffers from pneumonia and chest infections. For weeks at a time he becomes floppy and can't function as he has so many seizures.
When Dylan is at home his family feel like hostages, held to ransom by the severity of his seizures. They are unable to leave the house.
What Haven House offers them is a break. Without this they would not have coped as a family for so long. Janie, his mum, said: "As I know the experienced and highly trained nurses are able to care for all Dylan's needs I am able to relax for a few precious days a year and get a full night's sleep."
Dylan's family don't know what is going to happen next and having to watch their much-loved son and brother deteriorate before their eyes is heart-breaking. What they do know is that Haven House will be there to help them have the best Christmas together, just like it will be for the other 150 families they will be supporting this year.
All Haven House services are completely free of charge to families. Please make as generous a donation as you can to ensure the hospice has the funds to be there for all families that need their help now and in the future.