BiographyNancy was born by C-section due to being breech at 39+3. From 6 weeks old she started to have what could only be described at twitching movements. It was during the pandemic so I had a video call with the GP and went to the Children's ward to be told it was 'normal'. I knew it wasn't normal so I called the GP again and was sent to Children`s ward again. A doctor came in and said 'your little girl has seizures'.
Nancy had a week of testing and we were told she had Infantile Spasm, a particularly nasty type of seizure, epilepsy and Polymicrogyria, a form of brain damage. Nancy’s seizures continued to get worse even though she was on 3 anti-seizure drugs. She went up to 70/100 seizures every day all day and she ended up being put forward for TPO disconnection brain surgery.
She underwent her surgery in March 2022, 4 days after her 2nd birthday. We had to travel to Alderhey for her operation. Nancy still has 3 meds for her epilepsy and has daily seizures but only 4 to 8 a day. The operation caused her to lose her left peripheral vision in both eyes so she is sight impaired.
Nancy has had physio, speech and language therapy, feeding clinic, Portage, epilepsy team, orthopaedic and trauma team and the Neurologist involved for the last 4 years.
Nancy is unable to stand or walk independently and uses a walker to get around. She wears AFOs as her feet haven't developed properly due to her Polymicrogyria.
Nancy can learn up to 15 words at a time but then loses some words to replace with new ones. She is currently on the ASD assessment pathway.
Despite all of her challenges she is a happy and cheeky little lady.
Before her op she was unable to develop so it is amazing to see her personality shining through now and she starts school in September. Onto her next chapter.
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