Goldie is a 9-year-old girl who loves going to school, swimming in the pool and going on walks with her parents Kelly and Matt and her three big brothers.
Kelly always dreamed of having a girl, so Goldie felt like a little miracle when she was born.
“Life was perfect. I loved this parenting gig – doing arts and crafts, going to sports with the kids, sand pits and water play. I was just so happy,” said Kelly.
Goldie slotted right into their busy lives. She was just like any other baby, if only a little less active, which Kelly assumed was because of her forever-doting siblings. Then one day, when Goldie was just 10 months old, their family GP noticed that something wasn’t quite right. After being referred to a paediatrician, Kelly and Matt were given the life-changing news that Goldie had Rett syndrome.
Rett syndrome is rare genetic neurological disorder that leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. It is usually diagnosed in children between 6-18 months as they begin to miss developmental milestones or lose abilities they had gained. It also most often affects girls.
“We had never heard of Rett syndrome before. I remember Matt drove us home, and by the time we got there I had Googled and read probably a hundred articles,” Kelly recalls. “Matt was so strong. He’d say, ‘I don’t care about all that. She’s our little girl.’ I felt the same way, but it was devastating. Heartbreaking.”
Goldie started speech therapy and physiotherapy straight away but was soon unable able to crawl with her hands, eat or chew. Eventually, Goldie had a gastronomy which allowed her to consume the calories and nutrition she needed through a feeding tube.
“It’s so dreadfully hard, and it just doesn’t end. She cannot walk or use her hands, suffers from scoliosis when she’s in the car, has chest seizures. And then you think you’ve tackled one thing and the next thing pops up. Next, she is having her tonsils and adenoids removed due to severe sleep apnoea. As a parent to a child with Rett Syndrome you hardly ever sleep – it’s like having a newborn.”
Goldie will never be able to communicate and will need 24-hour care her whole life.
It was during a fundraising event that Kelly first learned about Variety – the Children’s Charity through St. Mary’s Rugby League Club. Kelly had recently applied for Goldie’s first wheelchair from the NDIS, and while waiting for a decision on her application was encouraged to apply for a vehicle modification for the family car through Variety’s We Move grant. We Move is designed to fill the gaps in funding for kids living with a disability to access life-changing, specialist mobility equipment.
Variety granted Kelly’s application to modify her vehicle to accommodate Goldie’s new wheelchair, giving Goldie more freedom to not only get to her therapy sessions easily, but also join her family on adventures and excursions.
Little did Kelly know that this was the start of a years-long relationship between Goldie and Variety, with Variety granting pool-heating equipment to support Goldie’s crucial hydrotherapy at home (Goldie is unable to regulate her own body temperature), as well as a Delta Recline All-Terrain buggy which allowed Goldie to be safely and easily rolled through muddy fields and gravel to watch her brothers play sports and go on camping trips with her family – the things that bring her and her family joy.
“I’ve been in very dark places mentally, and each time Variety have helped me out of it – every single time”, says Kelly. “Variety knows that family time is necessary; that mental health is necessary. They give us hope and remind families that people care, that there is support out there for them.”
When asked how people can help kids like Goldie, Kelly’s message is simple:
“Volunteer. Help now with any amount… $2… $20. Find a way. Make a difference. Be the difference. Don’t just wait until you are faced with these kinds of challenges, whether directly or indirectly. We’re all a team. We’re all in it together. Variety and our amazing community taught me that.”
“We wouldn’t be here without Variety, it’s just that simple. The red heart means everything to families like ours.”
How to support Variety
Your donation, no matter how small, could change the lives of children who are sick, experiencing disadvantage or living with a disability.
Read our impact stories Donate to Variety
Variety – the Children’s Charity supports kids (aged 0-18) who are sick, experiencing disadvantage or living with a disability. Our vision at Variety is for all Australian children to attain their full potential, regardless of ability or background. We’re passionate about all kids deserving a fair go, believing no child should fall through the gaps.
To stay in touch, sign up to our newsletter or follow us on social media:
