The mother of a son with an extremely rare, life-limiting condition has started a fundraising drive for the children’s hospice which helps look after him.

Mother Janie Torrance, 48, of the Lake House Estate, Wanstead, is visiting schools and libraries in the area to raise money for Haven House Hospice, in High Road, Woodford Green.

Her son, 10-year-old Dylan Torrance, has Partial Triplication 15, a chromosome disorder so rare that there are only ten recognised cases worldwide.

The condition, which she describes as a “one in a trillion”, leaves him unable to walk or talk and needing constant care and monitoring.

He also has a rare form of epilepsy which means seizures can happen almost constantly, a day in August he had around 400 in 13 hours, all potentially life-threatening.

Mrs Torrance has a target of £5,000 and over half has already been raised.

The cost of Dylan’s care for a week’s stay at Haven House is £6,622, a service which is completely free of charge to the family. 

She said: “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.

"It is awful, we have not been able to have a holiday as we can't get insurance and sometimes we go weeks without getting sleep as Dylan needs 24-hour care."

Mrs Torrance and her family moved to Wanstead in 2012 and views Haven House as being instrumental in helping them cope.

It also enables her to spend time with her other son, 13-year-old Callum, and her 48-year-old husband Andy.

She said: “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.

"We know 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.”

To donate to Dylan’s appeal, click here.