Southampton family feature on BBC appeal featuring Gyles

Southampton family feature on BBC appeal featuring Gyles Brandreth

Emily, 13, has Demyelinating neuropathy, a neurological disorder characterised by progressive weakness, with reduced function of legs and arms, having been diagnosed at age five.

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

The film shows the impact of Rainbow Trust’s family support workers, with the family having felt “isolated” before their support worker Michelle started assisting them.

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


“Doctors explained to us that they thought Emily may have something wrong because she was not presenting the same as most children when walking and had severe low weight,” Laura said.

“They underwent several tests that came back abnormal which then led them to do genetic testing which was what fully diagnosed her.

“She learnt to sit, walk and this condition takes it all away. It’s progressive so her nerves started to break down and take everything away.”

The condition was expected to affect only Emily’s mobility, but she soon needed breathing support as well.

Laura said: “Emily spends a lot of time in her bed because of pain she is at her most comfortable lying down so she misses out a lot on day-to-day experiences.”

At present, Emily has undergone various treatment with her parents as main carers. Laura said: “Emily needs 24-hour care. I am her main carer she requires two-hourly night moving and in between if needed.”

However, this has increased their burden, as they also have two other children, Oliver, nine, and Caitlyn, four, meaning support from Rainbow Trust is invaluable.

Speaking to the Echo, Laura continued: “We are supported by Family Support Worker Michelle. Michelle provides sibling support for Caitlin and Oliver and practical and emotional support for the whole family.

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

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

“Emily goes through so much but still cares about everybody else. She’s a really sweet girl. She enjoys watching other people being happy. Michelle helps us build memories,” Laura said.

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

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