Amber hopes for a cure in her lifetime

23 November, 2020

Amber was 33 when she found out she had MS. Like many in our community, this came as a big shock.

She was nursing her second child at the time, nine-month-old Archer. She remembers waking up with a numb hand, thinking that she had just “slept funny”. But when the numbing effect started to creep to her foot and limbs, she knew something was wrong.

Amber saw her GP on Monday, a neurologist on Tuesday, and was diagnosed on Thursday.

“It was really quick for me. Between my first symptom and diagnosis was six days, start to finish. My first question was, am I going to see my kids grow up?”

Not knowing anything about MS was scary at first. Amber and husband Mark were quick to admit they hadn’t dealt with anything like this before. As high school sweethearts, their life together was picture perfect ˗ close families, great jobs, and loved members of a tight-knit community in Sydney’s south.  In the early days of her diagnosis, they both felt like fish out of water.

We didn’t know anything about MS, except that it was really bad. We went home and started Googling everything we could about it. And thankfully, there was lots of good information online and on the MS Research Australia website”

After finding out as much as they could, they started to feel more confident. They could see that treatments would help and that research breakthroughs were happening all the time.

Thankfully, after Amber started her first round of treatment some of her symptoms improved ˗ although there was a downside, the steroids meant she could no longer breastfeed.

“I couldn’t breastfeed for 12 hours at a time. Archer wouldn’t take a bottle so Mark would take him for long walks at night and I would hear him crying as they came up the driveway. It was a really difficult time, managing a nine-month-old, two-and-a-half-year-old, and my MS.”

Today, Amber says that MS affects her life in more “insidious ways” with her symptoms more frustrating than anything, especially the fatigue.

“Day-to-day, the fatigue is the probably biggest thing that can affect family life. I call my bad days ‘MS days’, where I can’t get through everything. And those days make me feel like a pretty bad mum.”

Feeling like a “bad mum” and “worrying about the future” is common for me, says Amber. And her fears are real, like not being well for her family. Despite this, Amber’s hopes are real as well – especially for a cure in her lifetime.  She knows that treatments and potential cures are progressing all the time, thanks to MS research.

“I’m really pinning my hopes on a cure. I don’t want my children to have to grow up dealing with a mum that has MS any more than I currently do. And I certainly do not want any of my children to grow up and develop MS either. If that means we need a cure, we need a cure.”

Amber and Mark are thankful every day to those who donate to MS research because it’s for people just like them. Donations in any amount provide a steady stream of funding for research to help us find cures and treatments that will change lives for MS families.

Amber and Mark’s journey has been hard, but they know also it’s made them stronger and there have been some wonderful times too since her diagnosis. In 2018, Amber and Mark welcomed a third child, Aden. Amber always wanted a big family so being able to have another baby was a dream come true!

You can give hope to people like Amber and Mark with a gift here. If you’d like to discuss how you could do more to support our research, please contact Janene Gontier on 1300 356 467 or at jgontier@msra.org.au.

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