For those of you new to the life of William and his blog...
William was diagnosed as having brain development problems at his 20 week scan. Following further scans and MRI's they identified the following problems with William's brain; Agenesis of the corpus callosum, dandy walker variant and lissencephaly.
Agenesis of the corpus callosum: the corpus callosum is what joins the two halves of your brain together, agenesis means it is missing. So William has no corpus callosum.
Dandy walker variant: William has a variation rather than full blown dandy walker malformation. This means part of his cerebellum is missing.
Lissencephaly: this is the part of William's diagnosis which causes us the most problems. A normal brain is bumpy around the edge but William's is smooth. When his brain was developing, a process called neuronal migration didn't occur properly meaning the pathways in his brain didn't form as they should.
He has had two EEGs since birth and another MRI which confirmed the diagnosis. He is entirely tube fed, initially through an NG tube. He had a gastrostomy PEG fitted when he was six months old and this was replaced by a mickey button when he was 18 months old in May 2012. He had a Nissens Fundoplication carried out at the same time to treat his GERD. He has fits and infantile spasms which are usually controlled by medicine. His main seizure types are spasms, tonic clonic and focal seizures. William is life limited and we receive respite and support through East Anglia's Children's Hospices. He will be a slow developer, will never walk or talk but he is very lovely and has a beautiful toothy smile.
In October 2016 William was diagnosed with Type 1 diabetes and in 2017 added Spina Bifica Occulta to his list of diagnoses! He likes keeping us on our toes.
When he's not chilling at home with his ma, pa and sisters, William likes hanging out with his bestie, Freya and attending school. He enjoys chilling in his bedroom, playing on his resonance board and hanging out with his mates on Holly Ward at Hinchingbrooke hospital, our second home! We're pretty sure it's the fanciest children's ward ever!
