Mother opens up about child’s experiences with Rett syndrome

A UK mother has opened up about her 11-year-old daughter’s experiences with Rett syndrome, in a bid to raise awareness of the ultra-rare condition.

The condition, which affects one in every 10-12,000 females, is causing young Chloe Miller to “regress to a new-born baby,” according to mother Sarah.

“Rett syndrome is so rare that nobody could really tell me what was going on,” said Ms Miller.

“We were on holiday in Tenerife when Chloe had her first seizure. I’d never seen a seizure before, so I had no idea what was going on.

“I just remember her eyes rolling into the back of her head. It was terrifying,” she added.

At first, young Chloe was misdiagnosed with epilepsy when she was five years old – but it wasn’t until she passed her ninth birthday that she was officially diagnosed with Rett Syndrome.

“We had the tests done, but didn’t hear anything for six months, so I presumed things were okay,” said Miller.

“But then I received a phone call I’ll never forget. A doctor told me they had a diagnosis and asked for me to come in, but not to come alone.

“When they said Chloe had Rett syndrome, they told me the worst thing I could do would be to Google it. Of course, I did, though. The things that came up were terrifying. The life expectancy was poor and it basically sounded like my little girl was going to get swallowed up into a syndrome.”

Since the diagnosis, Sarah and Chloe have been supported by charity Rett UK.

“They showed me there is a light at the end of the tunnel, although I couldn’t see it at first,” said Ms Miller.

“There is light and hope. If you fight, you will get support. Rett is only as limiting as you let it be,” she added.

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