Gracie was born premature at 35 weeks in a very fashionable 1 hour! My contractions came fast and we only just made it to the Hospital before our precious sweet girl was placed onto my chest. Although she spent 3 nights in the NICU ward, she was a fighter. Gracie took to breastfeeding almost immediately, and she was a calm and happy baby.
As Gracie already had an older brother at home, I had a benchmark for what milestones were meant to be reached and when. When Gracie was 9 months old I had an instinctive feeling that she wasn’t quite developing appropriately. I took her to see the Paediatrician at 12 months old, and like many of the Syngapian mums before me, I was dismissed as an overzealous mother and she would 'catch up’.
She took her first wobbly steps at 18 months and around the same time started with the delightful sound of ‘mum mum’. Soon after came ‘moooo’ as Gracies passion is cattle! However, It was around this time we knew something was just not right. Why was she not waving, talking, or engaging appropriately like the other 2 year olds? Why doesn’t she answer when she is spoken to, and explore her surrounds? It was a dark place for us, but we knew we had to find answers and support.
At 2.5 yrs old we travelled to the US seeking answers and support we just couldn’t seem to find here in Australia. I connected with a fantastic Speech Therapist Lisa Klein who immediately begin therapy, based on the notion she had a motor planning impairment called ‘Apraxia’. We left the US after a few weeks with Gracie adding two new words and asking for ‘more’ and using sign language to help with simple requests.
It was with this diagnoses of Apraxia that our therapy journey begin with Gracie, we engaged skilled speechies via Telehealth, and Gracie had a dedicated Governess that worked with her at our home daily for 3 years working on early literacy and numeracy.
Over the years her aggressive behavioural issues and lack of speech were always very confronting for us, especially in social settings. However we always understood that most of her frustration is through her lack of ability to communicate and always tried to be understanding to her needs.
That was only the beginning of our journey, fast forward 5 years and 4 different speech therapists, 2 neurologists and finally a caring friend to suggest we see a Geneticist to have a full genome test performed; we confirmed Syngap1 disorder. Finally, answers to our sweet baby girls unique characteristics and quirks! I felt a sense of relief; All the unanswered questions I had. All the why’s. It was a surreal feeling. But then came the question, IS there a cure? We know what causes it, so fix it. Today, Gracie is a loving 7 year old who attends her local school, rides her horse, swims, plays, loves her family and is kicking goals in her own way. She deserves to live the full life her neurotypical peers experience, and we are making it our mission to ensure she does!
Queensland Country Life featured Gracie in a recent article in April 2022.