Meet Scarlett the beautiful ‘swan-child’ - one of thousands of youngsters whose disability is without a diagnosis.
The Oldbrook four-year-old cannot speak or make any sound and has problems walking in a straight line.
Yet despite dozens of tests, scans and scrutinies by 10 different specialists, no known condition has been discovered.
“All doctors can say is that she falls under the category of SWAN - a Sydrome Without A Name. It could be something genetic, but it could take 100 years to find out,” said her mum Stephanie Clift.
The charity Swan UK was set up to help Scarlett and the 6,000 children are born every year like her.
In a bid to raise funds for Swan UK, Stephanie produced a video of her and her family using sign language to ‘sing” the song This is Me.
“Sign language is the only way Scarlett can communicate with us and tell us what she needs. We’re not brilliant at it but we’re all learning,” said Stephanie, who is a single mum.
“I chose the song This is Me from The Greatest Showman soundtrack because it sums up my daughter. She is just Scarlett - we will probably never know what is wrong with her, but we accept her for exactly what she is and we love her regardless.
“I don’t mind what she has or hasn’t got - I would not change her for the world. She is my beautiful swan.”
Already Stephanie’s video has received hundreds of hits and has prompted more than £300 in donations to Swan UK .
To donate text SWAN18 to 70070 followed by the amount, up to £10, that you wish to donate.