THE MOTHER of a teenager who suffers up to 400 seizures a day is desperately calling for support for the people who help care for him.

Dylan Torrance was diagnosed with a condition called partial triplication 15 at the age of three.

The now 13-year-old’s chromosome mutation is so rare there have only been 18 diagnoses worldwide.

His mother Janie, of the Lake House Estate in Wanstead, cares for him almost 24 hours a day, as he is unable to eat, speak, or support himself.

She said: “I knew there was something wrong soon after Dylan was born.

“He would not feed, remained floppy and was uninterested.

“Up until we received the diagnosis we were really in the dark and I was doing a lot of research trying to work out the problem.

“Over the years the doctors have slowly built up a bit of understanding, but there are still a lot of things we don’t know about partial triplication 15.”

Ms Torrance does not know exactly what the future holds for Dylan, who also suffers from a severe form of epilepsy called lennox gastaut syndrome.

She added: “With Dylan it can very worrying in terms of the future.

“He’s changing all the time and sometimes it can be very challenging.

“He is set to try a new medication which hopefully can reduce the severity of his seizures.

“In a particularly bad period, he had 400 seizures in 13 hours - every one of these can be life-threatening.”

As part of Rare Disease Day this week (February 28) Janie wants to raise awareness of rare diseases like Dylan’s and encourage more people to think about the effects they can have on families.

Ms Torrance takes Dylan to Haven House Children’s Hospice in Woodford Green on a weekly basis and has been doing so for the last five years.

There he receives all the care, treatment, and physiotherapy he needs while she works two days a week as a hairdresser and takes her other 15-year-old son Callum on days out.

The mother-of-two said: “Haven House is a lifeline to Dylan and my family and I really hope people can support the hospice as part of Rare Disease Day.

“I don’t think people are aware of rare diseases and actually some of them are not that rare, with knowledge at least you can start to build an understanding.

“I’m still trying to find out more answers, I don’t think it’s curable what he has. Our focus is really on symptom management and improving the balance of his medication.

“Despite daily challenges Dylan can still enjoy life, and on good days, he can laugh and smile. I'm positive about life.

“I look at Dylan and I think 'how can I moan about my situation' when my son goes through this every day? He's so positive.”

Director of care at Haven House Eileen White said: “For children with rare and complex life-limiting conditions it can be very challenging for parents as often there is limited clinical knowledge about the condition and the child’s health can fluctuate rapidly.

“Through a range of services, we provide support to families like Dylan and Janie to help them through the most difficult circumstances imaginable.”

To donate to Haven House, see the website.