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Brave 11 year old Emily Crisp will be remembered at Exeter Santa Run

Among those taking part in this weekend’s annual Santa Run in Exeter is a group of health workers who have been inspired to take part in memory of an 11-year-old girl who recently died.

Emily Crisp, from Bradninch, had a very rare condition called Bohring-Opitz syndrome that affects the development of many parts of the body.

She was diagnosed when she was three months old and at that time there were only 30 other known cases of it in the world.

A team of around 10 members of Virgin Care's multiple sensory impairment team in Exeter volunteered to take part in an Exeter Santa run in memory of Emily, and raise money for Children’s Hospice South West which helped Emily and her family.

They joined around 600 other people who donned Santa suits to run across the city on Sunday, December 3.

During her short lifetime, Emily was supported by the multiple sensory impairment team, and in the last year before she died when her health deteriorated, they visited her at home so that she could continue receiving the beneficial therapy.

Emily’s mum Louise said:

“In the last year Emily wasn’t well enough to carry on going to school at Vranch House. The multiple sensory impairment team were quite involved with Emily so it’s really nice they are doing what they are in her memory. It’s a really nice thought and Emily would have found it quite funny.”

Describing Emily, she said: “She had very complex needs. She was severely disabled; She couldn’t eat, drink or stand, and had lots of other problems.

“Everybody loved her. She was such a lovely star. She was so happy and smiley and she didn’t want for anything. She had a placid nature and just loved cuddles, and was a bit cheeky!”

After Emily was diagnosed with Bohring-Opitz syndrome, her parents were told she was unlikely to live beyond a year, but she kept on exceeding doctors expectations year after year.

Louise, who also has a nine-year-old daughter and five-month-old baby, recalled: “Every year, on more than once occasion, we were told she might not pull through but she was such a fighter so when she did finally pass away we didn’t really believe she had gone.”

She died peacefully at home on September 6, and at her funeral her family asked for donations to Children’s Hospice South West instead of flowers, and raised £1,400.

Louise also run the London Marathon a few years ago in aid of the hospice.

Explaining the difference the hospice have made throughout Emily’s life, Louise said:

We were able to stay with Emily for a week at the hospice after she died. She stayed in Starborn (a very private space for families to say their goodbyes) and I don’t know what we would have done without that. They have always helped out such as providing respite stays for the whole of Emily’s life, and they come into their own at the end.

Source: Devon Live 2/12/17