BiographyDespite a difficult and monitored pregnancy, Rowan was was born a 'healthy' boy in 2014. Things changed when the community midwives noticed his sacral dimple a few days later. At 13 weeks we saw the paediatrician who was not happy with any of his development at all - he was floppy, not thriving, not holding his head up, not tracking with his eyes and was generally miserable.
Then came multiple tests, in-patient stays in London, bloods, MRIs, EEGs, physio assessments and surgery. Originally they thought it was a fatal mitochondrial disorder, so we were pleased in a way when we were told it was a life-limiting neurological malformation instead.
At about 8 months old Rowan was diagnosed with tubulinopathy, TUBB2B mutation, meaning that the microtubules in Rowan's cells do not act normally and so his neurons did not migrate to where they should've done in utero. His mutation is unique to him - he is truly our one in a million!
He also has structural focal epilepsy (due to his brain malformation rather than a chemical imbalance so it can be difficult to control), dysphagia (he aspirates fluids into his lungs), severe global delay, hypotonia, hypermobility in his ankles, cerebral visual impairment (he is registered blind and has little to no vision in his right eye) and sensory processing issues resulting in care issues (we struggle to trim his hair or nails), a self-restricted diet and chronic constipation.
On top of all of this, Rowan's behaviours and mannerisms lead to an autism diagnosis in Summer 2018. He can have challenging behaviour too.
Rowan has many diagnoses and has been through a lot in his short life. But he is overcoming these obstacles to be a happy, smiley, cheeky boy who loves life and is very curious and adventurous. He is thriving at his special school and is adored by the TAs.
Rowan loves Postman Pat, Teletubbies, cake, music, messy play, bouncy castles and hydrotherapy (or 'splashing everyone within 10 metres'!)
He is an incredible little boy and we are very proud of him.
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