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.
Keep in touch
If you have any questions please contact our Kids Support team on 02 9819 1000 or [email protected]
There are a couple of other ways to stay up to date on all that is happening at Variety for kids and families, including finding out about the return of kids experiences such as the Variety Kids Xmas Party. We send a monthly newsletter to families with kids aged 0-18, that you are welcome to sign up for. You can also join our dedicated Facebook group.
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