HEALTHY LIVING: It really helps meeting people going through this

Annie Mansell, aged three.
Annie Mansell, aged three.
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RACHEL and Craig Mansell did not discover their daughter Annie had a cleft palate until she was two days old. Testing revealed Annie also had an extremely rare genetic condition which compounds the three-year-old’s speech problems. Rachel, aged 36, from Wombwell, Barnsley, explained.

“We did not know anything was wrong until Annie was two days old.

Annie Mansell on the day she was born

Annie Mansell on the day she was born

“She was checked over by a paediatrician, to be discharged from Barnsley Hospital and they discovered she had a cleft soft palate - the bit at the back of the mouth.

“They did tests and discovered she also had a rare genetic condition called tetrasomy X, which means she has four instead of two X chromosomes.

“There are only 100 girls in the world who have been discovered with the condition.

“In a way the cleft palate was a blessing, because without that test we might not have discovered the genetic condition until much later.

“It means she has difficulties with developing speech, and she didn’t learn to walk until she was three. She has frequent health problems.

“With her speech condition its hard to know whether its because of the cleft palate or the tetrasomy X.

“She had a palate repair when she was 15 months old. But now it seems as thought is isn’t working. She may need more operations.

“She mostly communicates using signing. She can make one or two works but it’s not really intelligible for anyone who doesn’t know her.

“It has been hard. We are going through a phase at the moment were we are seeing the doctor a lot.

“It’s really helps meeting other people going through similar things, to talk through your experiences.

“It’s also nice meeting people with little babies who have cleft lip or palate is also good. It’s great to be able to pass that information on, about what they can expect.”