Six thousand children are born with an unknown condition in the UK each year.
Nellie, an 11-year-old girl from Liverpool, is one of those young people. As a baby she spent most of her childhood in Alder Hey Children’s Hospital, where at times she was fed through her veins.
Nellie also finds it difficult to sleep and suffers with stomach pains and bowel problems. Everyday life for family members is difficult and can sometimes be very lonely, according to Emma Mangan, Nellie’s mum.
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She said: "I have felt isolated in the past and cut off from 'normal' everyday life." But she said SWAN UK, who support youngsters with rare and undiagnosed illnesses, had been a “lifeline” for them.
The mother of five has been a member for more than nine years. She even wrote a piece for their website when she lost a baby two years ago.
Late in her pregnancy the doctor told Emma that they could not find the baby’s heartbeat. She found the devastating news very difficult to tell her children.
But when she did finally tell them, and Nellie, the young girl sweetly popped her mum a note which read: "Even though I’m disappointed never mind Mum you can just have the scan on a different day."
On SWAN UK and the work they do, Emma said: “I couldn’t imagine not having them in our lives.
“It is also an opportunity to be social which is so important when you feel isolated. SWAN UK has made me brave!
“Events are always very informal and an easy going experience. Sometimes more importantly for us parents and carers it’s an opportunity to be social by catching up with other SWAN UK members.
“I have also through SWAN UK visited Parliament as a guest of our then MP to hear about the work of the APPG on Rare, Genetic and Undiagnosed Conditions, in 2019 I also wrote a piece for Sky News and more recently wrote a piece for SWAN UK to Mark Baby Loss Awareness week Oct 2020.”
SWAN UK is run by Genetic Alliance and is the only dedicated network for families with undiagnosed conditions.
It works with children and young adults up to 25 years old who don’t know why they are ill.
