Ayla was born in October 2014. There were a few issues first identified, including Ayla's cleft palate which meant that she struggled to feed. She had slow weight gain and she was very small for her age. At 12 weeks old she was given an NG tube to help with her feeding as hr weight was only 6lb 15oz.
At four months old, Ayla had her first seizures and her weight was still low at 7lb 9oz. Her first seizure caused her to be unresponsive and she stopped breathing, leading to hospitalisation. The doctors were confident that the seizure was caused by a viral infection, but we felt there were underlying issues due to Ayla's slow development.
Sadly as the weeks went on, Ayla suffered from increasing seizures, with multiple myoclonic jerks everyday. Multiple AEDs were tried, along with the ketogenic diet, but nothing helped with the seizures. She was admitted to hospital frequently and was in intensive care five times. It was whilst waiting for the retrieval team to take Ayla to PICU in London that she went into cardiac arrest and sadly passed away in March 2016, aged 17 months. At this stage Ayla had no diagnosis.