Kylie’s grown up with multiple sclerosis being a part of her everyday life.
When she was just four years old, her mother was diagnosed with the condition and when she was 20, her older sister Bronwyn was told she too had MS. Bronwyn was just 25.
“I missed out on having a mum,” Kylie says.
You may remember Kylie from our letter at Christmas back in 2022. That letter featured Bronwyn, Kylie’s sister, telling her story. Now Kylie wants to share hers.
In 2018 when Kylie was 35, she got her own devastating diagnosis. She was a busy mum of two children, studying for a teaching degree, a keen netballer, and in a loving relationship with her partner, Keith.
While there were some signs a few years prior to her 2018 diagnosis that Kylie may have MS, the diagnosis wasn’t clear at that stage.
“I’d started seeing double and went to see a specialist and had an MRI and spinal tap done and the results showed lesions on the brain,” Kylie says of the 2018 diagnosis.
Kylie’s mum broke down when she heard the news. She felt responsible, even though the causes of MS are still unknown.
“I felt horrible because it made my mum cry,” Kylie says.
“She said, ‘I’ve given it to both of you (my sister and I)’.”
Later in 2018 Kylie had another MS attack, which landed her in hospital for a year. It’s left lasting effects on her left arm and leg, vision, cognition and speech. She now uses a wheelchair to help with her mobility.
Keith, who proposed to Kylie while she was in hospital, became her fulltime carer.
“I didn’t anticipate I’d be a carer for my fiancée, but I wouldn’t have it any other way,” he says.
Keith sees firsthand the fight Kylie puts in to break through daily barriers. He helps her with all aspects of her life. Throughout their most routine tasks – the doctor’s appointments, monthly visits to hospital for infusions – they find opportunities to laugh together.
“I don’t see Kylie as any different, I still see her as who she was when I met her,” he says.
Earlier this year the couple uprooted their life living in a regional town to move to Adelaide to better access care, treatment and support. It was then that Kylie became a client of the MS Society SA & NT.
“I’d heard of the MS Society through my mum,” Kylie says.
While a big change, the move has been positive for the couple.
In Adelaide, Kylie has regular check-ins with the MS nurses and does weekly hydrotherapy sessions with an MS physiotherapist.
“She says it’s the best day of the week,” Keith says.
“She feels she can do more in the pool.”
It’s not just the hydrotherapy that Kylie finds beneficial.
“She can always talk to someone at the MS Society, and even if they’re busy they call back the same day,” Keith says.
“The MS Society helped us get in contact with Kylie’s doctor here too.”
Kylie and Keith have also been able to add to their social calendar and connect to others impacted by MS. Since their move they attended the World MS Day Dinner in May and last month enjoyed a day at the Adelaide Zoo for the MS Society’s annual MS Family Fun Day. Kylie is also keen to join a craft MS Peer Support group.
Thanks to the generous support of our community we can provide services to Kylie, and people like her living with MS. Thank you for your support.