Journey of Southampton teenager with serious illness features in BBC appeal

A Southampton family have featured in a BBC appeal featuring writer and broadcaster Gyles Brandreth.

Emily, 13, suffers from demyelinating neuropathy, a neurological disorder characterized by progressive weakness, with reduced function of the legs and arms, having been diagnosed at the age of five.

Additionally, she lives with severe scoliosis, which leads to organ compression and decline in lung function.

The film shows the impact of Rainbow Trust foster carers, with the family feeling 'isolated' before their carer Michelle started helping them.

According to Emily's mother, Laura, the first signs appeared when Emily was five years old.

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“The doctors told us they thought Emily might have something wrong because she didn't look the same as most kids when she walked and she had very low weight,” Laura said.

“They underwent several tests which came back abnormal, which then led them to do genetic testing which fully diagnosed his case.

“She has learned to sit, to walk and this condition is taking everything away from her. It's gradual, so his nerves started to deteriorate and take everything away.

This condition was expected to only affect Emily's mobility, but she soon also required respiratory assistance.

Laura said: “Emily spends a lot of time in bed because of the pain, she is more comfortable lying down so she misses out on a lot of everyday experiences.”

Currently, Emily has undergone various treatments with her parents being the primary caregivers. Laura said: “Emily needs 24 hour care. I am her main carer, she needs to move at night every two hours and in between if necessary.

However, this has added to their burden as they also have two other children, Oliver, nine, and Caitlyn, four, meaning the Rainbow Trust's support is invaluable.

Speaking to the Echo, Laura continued: “We are supported by Michelle, a family support worker. Michelle provides sisterly support to Caitlin and Oliver as well as practical and emotional support to the entire family.

“Michelle keeps me going. She is a very positive person and helps you see the light at the end of the tunnel.

By appearing in the BBC film, Laura hopes to encourage families to seek help from the Rainbow Trust, which has brought positive moments for her family.

“Emily goes through so much but still cares about everyone. She's a really nice girl. She likes to see others happy. Michelle helps us create memories,” Laura said.

You can watch the film via this link and donate to the Rainbow Trust here.