A toddler with a mystery illness has stumped 37 different doctors who have been unable to diagnose why she cannot walk, talk or eat.
Loren Henderson, two, attends up to 16 medical appointments a week but her condition has baffled doctors ever since she was born purple and not breathing.
Medics have dubbed her condition ‘SWAN’ – syndrome without a name – because she is the only person in the world with her specific genetic condition.
The symptoms have left her unable to sit up or eat and she has to be fed through a tube.
But her parents Colette Jessup and Mark Henderson say that despite her difficulties she is a happy child who always smiles and loves cuddles from her five brothers and sisters.
Mum Colette, 42, of Hengrove, Bristol, said: “On paper she can’t talk, can’t sit, can’t stand, can’t walk, can’t eat.
“You would think ‘What sort of a life has that child got?’ But she’s the most inspiring little girl ever.
“She loves rolling around, loves having cuddles and has started learning sign language – she is just so happy.
“We have lots of appointments and meetings but Loren sits there with a smile on her face.
“She’s amazing, absolutely amazing.”
Loren’s family moved from Taunton, Somerset, to Bristol 18 months ago so they could be nearer the Bristol Royal Hospital for Children where she is treated.
Her information has been added to a database along with hundreds of other children who have mystery illnesses in the UK.
“Moving was the best decision we ever made,” said Colette. “The support we receive is phenomenal.
“Loren has progressed so much in the 18 months since we have been here and has really got stronger.”
The family receives much-needed support from the Rainbows Trust which helps youngsters with life-limiting or terminal illnesses, and provides a support worker who helps look after Loren and also lends a hand around the house.
Colette added: “When they come in they are part of the family.”
Family friends are taking part in a skydive for the charity.
To support the event visit: uk.virginmoneygiving.com/
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