A special day for Ciara

Jeans for Genes day will have a special resonance for Newbury mother Elly Hase and her disabled daughter Ciara

THIS week's Jeans for Genes charity day will have a special resonance for Newbury mother Elly Hase and her disabled daughter Ciara.

For the six-year-old has a rare chromosome disorder which causes developmental and speech delay, difficulties with movement and behavioural problems.

Ms Hase, a teacher at Spurcroft Primary School in Thatcham, has spoken of the strain of caring for Ciara and her older brother, five-year-old Oscar, who is unaffected.

She added: “The charity Unique helped me cope. The support they gave were fantastic. They explained in detail exactly what Ciara's condition is. There is no point not learning the technical terms.”

As a toddler Ciara was one to two years late in meeting her developmental milestones. She didn't walk until 30 months, didn't speak for a long time and Elly communicated with her using Makaton sign language.

Today Ciara can walk, run and read but uses her own system of recalling words, not phonics.

Ms Hase, aged 34, added: “Ciara loves to play chase and have cuddles – she's a very loving child - and enjoys playing with beads. She gets on very well with her brother. Her behaviour is affected by the condition, which is hard to cope with. She gets tired very easily and we do have challenging behaviour.”

The charity Unique is supported by the national Jeans for Genes day on October 7 and Ms Hase has urged everyone to support it by making a donation to wear jeans to work.

More information is available by clicking on the link below.

Picture: Memories Thru A Lens