English
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Sydney, Australia
3 years old
May 4, 2022

Aidan

Our delightful son Aidan is a gentle soul. He has bright blue eyes with blonde lightly curled hair and a beautiful smile coupled with an infectious giggle. He loves hugs and kisses, and enjoys tickles, swings and being sung to. He loves music, especially The Wiggles, and the show Hey Duggee which he finds hilarious. He is mesmerised by vibrant colours and pattern objects, and like other syngapians he adores playing in water.

Aidan's delays first became noticeable at 9 months old as he wasn't crawling. As his first year went by he still wasn't crawling or communicating well. He was diagnosed with hypotonia and GDD, then December 2021 diagnosed with syngap1 syndrome. His diagnosis has been devastating for our small family and we are still processing what this means for his life's entirety, however the silver lining has been the amazing global network of syngapian parents which has been comforting to know we aren't alone anymore. We have been lucky that Aidan hasn't developed epilepsy yet but this might be due to his young age. We are constantly on the look out for signs of fits but we are hopeful he will be in the minority of syngapians that don't suffer from epilepsy.

Aidan currently undergoes speech/physio/OT therapies however the development gap between himself and his peers continues to grow and become more apparent. After lots of hard work he recently took his first steps (yay!). Our focus for the new year is on communication as he remains non verbal with basic communication skills, and he becomes very frustrated when he can't communicate. As a mother it pains me that I'm unable to make Aidan's condition better. I often wonder about when he's older... will he still be happy? Will he have friends? Will he be able to live independently? All the things I took for granted growing up will be so much harder for him. No child deserves to start life with a disadvantage. I hope with the incredible advancements in modern science a treatment for all syngapians will be available in the coming years and we can see Aidan grow to his full potential.

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