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Baby diagnosed with rare condition that only 1,200 other people have

A baby has been diagnosed with two rare conditions, one of which is life-threatening, after her mum noticed a rash when she was born.

Chloe Skelly, from Bridgend, had her beautiful baby daughter Emilie-Rose at 39 weeks, after reduced foetal movements were recorded and Emilie-Rose’s heart rate began to drop.

The decision was made for an emergency C-section to be performed, and Emilie-Rose was welcomed into the world in June 2021.

However, it was swiftly noticed that Emilie-Rose had a rash, which was originally believed to be sepsis. A few days later the rash flared up significantly, causing Chloe to worry.

“It flared up really bad and started to blister, so I ended up taking her into the hospital.”

At this point, a specialist diagnosed Emilie-Rose with incontinentia pigmenti, a rare genetic condition that affects only 1,200 people worldwide.

The condition is initially characterised by a skin rash, however, Chloe said it can later cause her to “lose her hair, have nail and teeth problems, lose eye-sight and also start up seizures”.

You can read our ful interview with Emilie-Rose’s mum, Chloe, here

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