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Stacey is one of our fabulous Queensland based Parent Mentors. She is mum to three children, Chelsea her 13-year-old daughter and twins aged 8, Grace and Noah. The twins were born premature at 28 weeks. Grace incurred many severe health issues. She has a moderate/severe to severe hearing loss bilaterally. She wears hearing aids and also has a Roger FM system. Stacey and her husband Adam had to work out for themselves the best path for Grace. This is something Stacey doesn’t wish on anyone. It is why she is so passionate about her role and the Parent Mentor program. Grace had to really fight for her life, experiencing many severe health complications that impacted on her development. Stacey said, ‘The complications at birth speak to why her hearing loss is still unexplained and how her story is not just about having a hearing loss, but also about having other disabilities as well. Grace passed her hearing checks, but at 2 years of age, we noticed something was wrong. She wasn’t talking, making noises, she was living in her own little world. We raised our concerns and everyone, including medical professionals, said we were overreacting. We pushed and pushed for a hearing test trusting our instincts. She was diagnosed with a moderate/severe to severe hearing loss. Advocating for your child is really important.’ Grace has a significant global developmental delay which affects her physically and socially as well as her speech and language. She also has an acquired brain injury which has caused an intellectual impairment. Stacey and Adam threw themselves into researching what medical and social path would be best for Grace. They waded through all the information and options presented at diagnosis and hit Google. Stacey’s lived experience is shared with her families to help make it easier for them to identify the best options and to navigate what is relevant for each family. This then helps parents make informed decisions for their child. ‘I can help alleviate some of the stress and worry by providing support and guidance,’ she said. Stacey and Adam didn’t have this support. It made it really hard and incredibly stressful for them to work out the best options for Grace. ‘I am often asked if the twins have built a connection because of Gracie’s hearing loss. They most certainly have and if anything, I think it is stronger as Noah is very protective of her. Grace attends a mainstream school with Noah and has heaps of friends. She isn’t bullied and is happy and progressing at her own pace. I absolutely love my job. Helping families to navigate what can be an emotional roller coaster and seeing families connect with their child is incredibly rewarding,’ Stacey said. Learn more about our Parent Mentor Program.
Left to right, Stacey, Bianca, Rosy and Emma at the launch of the Parent Mentor Program at the Royal Childrens Hospital.
Top Left to right, Stacey, Rosy and Bianca on an online zoom meeting.