Wanstead mum calls on public to support Haven House for Rare Disease Day
PUBLISHED: 14:00 28 February 2017 | UPDATED: 14:07 28 February 2017
A mother whose son suffers from one of the rarest diseases in the world is raising awareness of the family’s struggles for Rare Disease Day.
Janie Torrance, from Wanstead, is urging the public to support Haven House Children’s Hospice, in Woodford Green, as they help care for children like her 13-year-old son, Dylan, who suffers from a disease so rare it hasn’t been given a name.
Dylan was born with a chromosome mutation, known as Partial Triplication 15, and is only one of 18 people diagnosed with the condition worldwide.
The disease has left Dylan unable to speak and in need of a wheelchair and causes him to suffer from life-threatening seizures - and can have up to 400 in a 13 hour period.
Janice, who often fundraises for the charity, spoke of the difficulties her family has faced and how the hospice’s services have helped relieve the strain on them all.
“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,” said Janie.
“Accessing physiotherapy at Haven House has made a huge difference to Dylan. He finds it hard to remain upright and physio helps him maintain his posture and mobility.
“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.”
Eileen White, director of care at Haven House, explained that the lack of available knowledge of rare diseases is a major cause of stress for parents and the hospice’s services aim to relive this pressure on them.
“Through a range of services, we provide support to families like Dylan and Janie to help them through the most difficult circumstances imaginable.”
Unfortunately Dylan’s condition is not thought to be curable but Janice says that he is still able to enjoy himself.
“Despite daily challenges Dylan can still enjoy life, and on good days, he can laugh and smile. I’m positive about life.”
To donate to Haven House Children’s Hospice go to havenhouse.org.uk/donate-to-haven-house.
To learn more about Rare Disease Day, which takes place on the last day of February (today), visit rarediseaseday.org.
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