Noah was born November 2016 and was initially diagnosed with Pierre Robin Sequence; were told at birth he had a cleft palate, a recessed lower jaw and his tongue was blocking his airway. He spent 18 days in NICU and on day 15 we were told of his diagnosis of 2q32.3q33.1 deletion. In the January we had an appointment with genetics who mentioned the SATB2 gene was included in this deletion. I then found the SATB2 family Facebook group ❤️

He was exclusively NG tube fed for 2 months, until it was safe to introduce a bottle, then at 6 months we took his tube out for good and never looked back, he loves his food! He was an early roller but later than average with all other gross motor skills; walking unaided around 2 years old.

He loves; swimming and splashing in water, playing with his assortment of vehicles and admiring himself in the mirror or photos! He also loves his little brother.

Noah is non verbal & uses makaton to communicate and although his signs are approximated, as a family it has become easier to understand him, he loves to sign his favourite animals and learns a lot from Mr Tumble!

Noah is such a happy, sociable and curious child, and we see his determination in everything he does.