Rare condition leaves Sunderland toddler unable to speak

Angela Cheal raising awareness of her daughter Lacey Dunwell's condition CDLS, for Awareness Day.
Angela Cheal raising awareness of her daughter Lacey Dunwell's condition CDLS, for Awareness Day.
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LACEY Dunwell may be the only person in Sunderland with a rare condition – but she never lets it stand in her way.

Proud mum Angela Cheale has dubbed her toddler “Little Miss Independent” for how well she copes with having Cornelia de Lange Syndrome (CdLS).

Despite being two and a half years old, Lacey is only the size of a six to nine-month-old baby – one of many complications associated with the genetic condition.

Others affect her development and the Town End Farm youngster also doesn’t speak. She has problems with her ears and eyes and is due an operation on her tear ducts soon.

Mum-of-four Angela said: “She’s a happy little girl and is very determined, I call her Little Miss Independent.”

Though Lacey was born small at 4lb4oz a week after her due date, no one realised there was anything wrong at first.

“All my girls had been born small, though not as small as Lacey, so I didn’t think anything was wrong at first,” said Angela, who is also mum to Keira, seven, and twins Chloe and Megan, four.

She added: “As she got older I got more and more concerned about her growth and development.

“At first the health visitor said she was just small, but after a year she was referred to see a genetics specialist at the Centre For Life where she was diagnosed.”

CdLS is so rare that it is thought to only affect around one in 10,000 to 30,000 births.

Angela, who is a full-time carer for Lacey, said: “As far as I know, my daughter is the only person in Sunderland with CdLS and I only know of two other families in the North East who have a child with CdLS.

“When I found out she had it, I didn’t think anything of it – it’s so rare there were no leaflets to give me, I was just told a name.

“Then when I got home, it hit me and I found out more about it.”

Saturday is CdLS Awareness Day and Angela is hoping it will help to create a greater understanding of the condition while also promoting the work of the Cornelia de Lange Syndrome Foundation.”

“People are always asking why she is so small or why she doesn’t talk.” said Angela.

“When my daughter was diagnosed, my world was turned upside down, I had never heard of it and was told very little about it.

“The charity Cornelia de Lange Syndrome Foundation were a huge help and support to me.

“They sent me out loads of information and I also had a chance to meet other families at the annual conference in Guildford. It made such a difference to know they were other people going through the same thing.”

l For more information on CdLS, visit www.cdls.org.uk.