Hi, my name's Bec, I'm 26. At the end of February 2017 I found out that I inherited a degenerative gene in my family called Spinocerebellar ataxia type 3 (SCA 3), also known as Machado-Joseph disease (MJD). MJD is a progressive disorder and has a massive impact on the quality of ones life. There is no cure. My Mum had MJD, as do two of her siblings and their Mum. My younger sister and I had genetic testing done and found out we both have the gene.
The exact progression of the disease is different from person to person, as is the speed of the progression. However, the pattern seen is a gradual degeneration in:
• ability to walk without falling over;
• verbal communication ability;
• swallowing ability;
• vision (blurred and shaky vision);
• speed of reflexes (or reaction time);
• muscle strength; and
• urinary continence.
The 2020 Ten Summits Challenge is to raise awareness for MJD and people with disabilities in memory of my Mum who passed away in August 2018 from MJD at the age of 52. Mum was so proud of our efforts in the 2018 challenge which raised $27,121.41 for the MJD Foundation. The 2020 challenge means so much more to me. Mum saw a small amount of change from the awareness that we raised. But watching the suffering and hardships Mum and Dad went through, especially in the last year of her life, has given me a new drive to continue to raise awareness.
The 2020 fundraising goal is $42,063.75 which was set by my Dad. He set this goal as this was the amount Mum was allocated by the NDIS for assistive technology but did not see a cent of. They applied for things such as modifications to Mum's wheelchair to support her changing posture, a personal pager so Mum could let Dad know when she needed him when he wasn't within earshot, and portable ramps to assist in accessing buildings that have steps. Unfortunately these applications were always waiting for "final approval".
All the money raised from the Ten Summits Challenge is guaranteed to go to those who need it.
I also want to give hope to people going through a similar situation to me. It doesn't have to be MJD, but all people who have hereditary genes in their family, people that have watched a loved one suffer and may face the same suffering themselves.
It's not just about creating awareness for MJD for me, it's about empowering people who have been misjudged and mislabelled, and supporting those who care for other people. It's about helping people understand that a disability doesn't define who someone is, it doesn't make them any less of a person. If you know of someone with a disability, know of someone who cares for someone else, especially a parent who cares for the other parent. Cook them a meal, go mow the lawns for them, offer to drive their kids to school on rainy days, find a way to help. And for those families, allow people to help you.
How can you help?
Share the Ten Summits Challenge with your friends and family. Help raise awareness!
Follow us on facebook and instagram.
Donate to show your support. All the money raised goes to the MJD Foundation for research into a cure and to help those living with MJD and the families that care for them.
Help us reach our goal!
$1 per peak ($10)
$1 per kilometres hiked ($75)
1cent per metre of the combined hight of the peaks ($217.88).
Give what you can!
All businesses that support us will be listed on the sponsors page, and there will be the option of having a business logo on the page if a donation of over $100 is given.
More info at www.tensummitschallenge.com