Olivia-Mae (DOLLY), that’s what we all call her, was diagnosed with foxg1 syndrome at the age of 11 months old. As a tiny baby she cried 22 hours a day inconsolably, nothing would calm her down,no one knew what was wrong.
Foxg1 syndrome affects the front part of the brain and muscle tone. We were told Olivia would never walk, talk, eat, she would have epilepsy at some point in her life and many more complications too. On learning Olivia's diagnoses we were told the eldest living child in the medical journal with what Olivia had was only 7. Our world fell apart.
Olivia-mae is now 12 and she’s the happiest little girl we’ve ever met and has an infectious smile for every occasion. Even at her weakest she always has a smile. She suffers massively with her epilepsy and also has a very significant curve in her spine and a hip that’s ready to dislocate. She is in constant pain. She produces ridiculous amounts of acid in her little tummy that pour out of her gastrostomy and burn her tiny belly. We’ve just recently had to start feeding her through an NJ tube to give her tummy a rest. She’s awaiting major spinal surgery and hip surgery too. Both come with some really big risks but despite all of this she is the bravest little girl we know with the most infectious smile ever, she’s perfect in every single way. She’s our beautiful little Dolly xx