Arts group helping two very special youngsters; Condition affects one in 32,000.
Byline: Martin Shaw Assistant News Editor firstname.lastname@example.org
SCARLETT Berrett is a special little girl. In fact she's one in 32,000.
The Birchencliffe youngster has a rare genetic disorder called Kabuki Syndrome, a condition which results in learning difficulties and other health problems.
Often mistaken for Down's Syndrome, the condition causes distinctive facial features including arched eyebrows, elongated eye openings and long eyelashes.
Kabuki Syndrome, which affects one in every 32,000 babies born, was discovered by two Japanese doctors and named because of the facial resemblance to stage make-up worn by actors in the traditional Japanese theatre art, Kabuki.
Scarlett, eight, was born prematurely at Huddersfield Royal Infirmary and was diagnosed aged six months.
At that time the condition was so that time the condition was so A rare few doctors had heard of it.
Scarlett's mum Jeanette, 51, thought her daughter was the only child in Huddersfield to have the condition - until she turned up one day at a support group and met another mum.
Jeanette and Scarlett attend play sessions at Shabang, a music and arts group for children with special needs, at The Watershed in Slaithwaite.
Jeanette met Emma Ahmed and son Kareem, now four. Kareem also has Kabuki Syndrome.
"It was a big shock," said Jeanette. "But suddenly you don't feel like an outsider anymore. It's nice to have someone who understands."
Before then Jeanette's only contact with other parents was via the internet.
Now Jeanette and Scarlett and Emma and Kareem meet up at Shabang - to enjoy fun and musical performances with Kim Reuter and R uss R Elias - and outside. They ALSOspeak on the phone all the time.
"It's really great to have someone else to talk to," said Jeanette, who is married to Stephen, 49, and has three grown-up children.
While Scarlett is different to other youngsters at Shabang, she is a little star.
"Scarlett has a really curious personality," said Jeanette. "Everybody E who meets her loves her to bits. She is amazing."
To mark Kabuki Syndrome T AwareA -ness Day on October 23, Jeanette and Emma are having a party at a play gym for Scarlett, Kareem and their friends.
KABUKI FACTFILE | Kabuki syndrome has been |previously known as Kabuki makeup syndrome, KMS or Niikawa-Kuroki Syndrome I t is a paediatric congenital |disorder of suspected genetic origin with multiple congenital anomalies and intellectual disabilities.
It was identified and described in |1981 by two Japanese groups, led by the scientists Norio Niikawa and Yoshikazu Kuroki.
Jeanette Berrett and daughter Scarlett and Emma Ahmed and son Kareem who have |Kabuki Syndrome at The Watershed, Slaithwaite 091014EKABUKI_03 JULIAN HUGHES
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|Publication:||Huddersfield Daily Examiner (Huddersfield, England)|
|Date:||Oct 16, 2014|
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