Purple in aid of Moebius Syndrome awareness
The community is urged to wear purple on January 24 in aid of Moebius Syndrome.
BRACKENHURST – Ella-Jade Tambellini (2) was diagnosed with Moebius Syndrome – an extremely rare congenital neurological disorder which is characterised by facial paralysis and the inability to move the eyes from side to side,
In many cases it is reported that the development of the syndrome is not immediately identified as children with the syndrome have a normal intelligence.
Ella-Jade was tested on a high IQ test which proved she was very clever but just could not express herself.
Moebius Syndrome results from the under-development of the VI cranial nerve, which controls lateral eye movement and facial expression, therefore Ella-Jade and other children much like her cannot move their eyes from side to side.
The syndrome is not curable although Ella-Jade and her mom, Jeanine, work very hard to control the symptoms. Ella-Jade has only just started blinking, which proves that she is one of the lucky children, as many children with the syndrome do not show signs of any progression.
“Many children in Ella-Jade’s nursery school ask why she looks so angry and children notice her syndrome quicker than adults do,” said Jeanine.
She can undergo facial surgery at the age of seven and eight, although Jeanine will see how it goes with her growth and progression.
Jeanine shared her daughter’s story to make the community aware of how rare the syndrome is. On January 24 it is National Moebius Syndrome Awareness Day and Jeanine is asking for community participation in wearing purple on the day.
“I would also like people to know that there is nothing wrong with her. Please also help with the smile foundation, as it is they who puts a smile on their faces through surgery,” said a loving mother.
