Bellinda is a full-time mum and carer to her two young sons, who were born with Fragile X Syndrome, a genetic condition that can result in various developmental difficulties.
A journey of care
2020 changed a lot for Bellinda and her family. Her oldest son Jaxon was diagnosed with Fragile X Syndrome and her newborn son Alex was given the same diagnosis.
Fragile X syndrome delays the boys’ fine motor skills, strength and physical development, coordination and cognition.
On top of the usual responsibilities of parenthood, Bellinda has to manage extensive therapy schedules for both boys. “The boys like to do the right thing and they don’t like failure,” she says. “We have to get pretty creative with therapies and activities.”
Every outing requires preparation and planning. Jaxon and Alex, who struggle with changes in routine and are easily overstimulated, have to be properly prepared for even the most basic trip to the park. But, that doesn’t stop the Hartmanns from getting out there.
“Every opportunity is a therapy opportunity,” says Bellinda. “The most important goal in my life is to make sure the boys are living their best lives,” she adds.
In the long-term, she hopes Jaxon and Alex will be able to live together independently of their parents.
The family is seeing results of the boys’ intensive therapies and is proud of what they are achieving.
Therapist in training
The start of Bellinda’s care journey was filled with research on Fragile X Syndrome. “I wasn’t just educating myself; sometimes I was educating the doctors and therapists too,” she says. “We faced a lot of waiting lists. There were a lot of people putting my children into a ‘one-size-fits-all’ box and I knew that wasn’t right.”
Previously a high-ranking accountant, Bellinda is now studying to become an Occupational Therapist. “I want to be able to do the most I can for my boys and someday help other kids and parents who are living with Fragile X Syndrome,” she says. “From my own family’s journey, I know early intervention can really change the outlook of a child’s life.”
“The most rewarding part of our journey is when the boys are laughing and happy together,” says Bellinda.
“We were told not to expect the boys to ever play together based on their expected delays, but we’ve proved them wrong. We have a small plastic slide outside and sometimes I’ll just sit and watch the boys chase each other up and down it and run around in the yard.”
Supporting her community
Now that she has found her stride, Bellinda wants to help others. Understanding the stress and fear that can accompany becoming a carer, she regularly gets in touch with parents who are managing new diagnoses of Fragile X Syndrome.
“When it was me in their shoes, I felt like I had to know everything, but I want them to understand that this journey is a marathon, not a sprint.”
Support for herself
When Bellinda found Carer Gateway, she found a range of support that focused on her.
“You don’t know what you don’t know,” she says. “And you don’t need to know everything right now. The great thing about Carer Gateway is you can start by just talking with someone to learn what’s on offer to help you.”
Carer Gateway’s tailored support packages and counselling are resources every unpaid carer should have in their back pocket,” says Bellinda. “Personally, these services, along with the respite support, give me the greatest peace of mind.”