My Activity Tracking
60
kms
My target 60 kms
My Red Socks Challenge for Kidney Health
People on dialysis spend around 60 hours every month connected to a machine. My sister is currently going through Dialysis and awaiting a transplant. Our family has a genetic kidney disease. I am doing this for all.
This October, I have committed to the Red Socks Challenge, to stand with Australians living with kidney disease.
I will be taking on 60km in October to honour the hours spent on dialysis - raising awareness and helping fund better care.
Please donate to support a better future for people with kidney disease.
My Achievements
Made a self donation
First donation received
Halfway to fundraising target
Hit fundraising target
Shared on social media
Created a team
Half way to KMs
Reached KMs Goal
Logged first fitness activity
Created a Blog Post
Fundraising Milestone Reward #1
Fundraising Milestone Reward #2
Fundraising Milestone Reward #3
Fundraising Milestone Reward #4
Fundraising Milestone Reward #5
My Updates
My Story: Living with X-Linked Alport Syndrome
Friday 30th Oct My Story: Living with X-Linked Alport SyndromeMy name is Rebecca, and I live with a rare genetic condition called X-Linked Alport Syndrome.
I was diagnosed at a young age after my sister underwent testing and was confirmed to have the condition. Because Alport Syndrome is inherited, my diagnosis came early, allowing doctors to monitor my health throughout my life.
Alport Syndrome is a genetic condition that affects collagen, an important building block in the kidneys, ears and eyes. Over time, it can lead to kidney disease, hearing loss and vision problems. The severity of the condition can vary greatly from person to person, even within the same family.
I consider myself fortunate. At this stage of my life, I am not receiving any treatment and I have very few symptoms. I attend six-monthly kidney checks to monitor my health, and thankfully my results have remained stable. While Alport Syndrome is always something I need to be mindful of, it has not stopped me from living a full and active life.
However, my family's experience has shown me just how unpredictable this condition can be.
My sister's journey has been much more challenging. She is currently on dialysis and waiting for a kidney transplant. Watching someone you love face the daily realities of kidney failure is a stark reminder of how serious Alport Syndrome can become. Her strength and resilience inspire me every day.
As a mother, one of the most emotional parts of my journey has been learning that both of my daughters have also been diagnosed with X-Linked Alport Syndrome. They currently undergo yearly health checks so their kidney function can be closely monitored.
Like any parent, I want my children to have every opportunity to live healthy, happy lives. While there are uncertainties about what the future may bring, I am grateful that they have been diagnosed early and can receive the ongoing monitoring and care they need.
Living with Alport Syndrome has taught me that awareness matters. Many people have never heard of this condition, yet early diagnosis can make an enormous difference. Regular health checks, specialist care and increased understanding can help people manage the condition and make informed decisions for their future.
Alport Syndrome may be part of my story, but it does not define who I am. I am a mother, a sister, a daughter, a friend and a professional. I am also an advocate for raising awareness of a condition that affects thousands of families around the world.
By sharing my story, I hope to help others understand what X-Linked Alport Syndrome is, encourage people to seek answers if they have a family history of kidney disease, and remind those living with rare conditions that they are not alone.
Every family's Alport journey is different. Ours is a story of early diagnosis, regular monitoring, resilience, hope and the strength that comes from supporting one another through life's challenges.
Together, we can make Alport Syndrome more visible, better understood and better supported. Share
My Sister's Story
Friday 9th OctToday, I want to share my sister's story.
Many people don't see what living with chronic kidney disease really looks like. They don't see the hours spent attached to a dialysis machine, the surgeries, the medications, the exhaustion, or the impact it has on every part of life.
My sister was diagnosed with X-linked Alport syndrome at just six years old after undergoing a kidney biopsy. For years, she attended regular specialist appointments, carefully monitoring her kidney function. After the birth of her third child at 27, her kidney function dropped significantly, and despite participating in a clinical trial that helped stabilise things for a while, her kidney disease eventually progressed.
At just 33 years old, she started dialysis. What began as two sessions each week has now become three five-hour sessions every week. That's more than 20 hours spent in treatment, not including travel time. Each session involves having two needles inserted into her arm through a fistula created surgically for dialysis access. Over the years, she has endured multiple surgeries to repair and maintain that access, along with other procedures, including having her parathyroid glands removed.
What many people don't realise is that chronic kidney disease affects so much more than your kidneys. It can mean constant fatigue, itchy skin, strict fluid restrictions, dietary limitations, and having to carefully plan life around treatment schedules. It impacts work, family time, social events, and even the simple freedom of being spontaneous.
For more than four years, my sister has faced all of this with incredible strength and determination. Recently, she took the next step in her journey by attending education sessions about kidney transplantation and beginning the process of understanding what is required to join the transplant waiting list.
What amazes me most is her attitude. Despite everything she has been through, she continues to stay positive and focus on what matters most. She often says that her family is what keeps her going, and that this journey has shown her who her true friends are.
As her sister, I am incredibly proud of her resilience, courage, and strength. Sharing her story is important because kidney disease is often invisible, and many people don't realise the physical, emotional, and practical challenges that come with it every single day.
If you know someone living with chronic kidney disease, please be kind. You never know what they may be carrying behind the scenes.
💚 To my sister: your strength inspires our family every day. We are so proud of you.
About my journey
Monday 5th Oct I was diagnosed with Alport syndrome, a rare inherited kidney disease that affects the body's collagen. While it is best known for impacting kidney function, it can also affect hearing and vision over time. Growing up, we were told that women were simply carriers of the condition. However, medical understanding has since advanced, and it is now recognised that women can have and be affected by Alport syndrome as well.Thank you to my Sponsors
$106.75
Jenny Meredith
$100
Wendy Jones
A cause that is very important to our family Wishing you all the best Becky Loads of cariad from me and Nainy
$55.95
Vanessa Carroll
$55.95
Bec M
$55.95
Olga And Malcolm
$45.30
Lisa Battaglini
💚 🏴 💚
$34.40
Pene Family
$23.81
Madeline Lange
❤️
$23.81
Elizabeth Meredith
You've got this Bec
$23.81
The Coopers
$23.81
Sharyn
Proud of you Bec. Such a worthy cause for your family.
$23.81
Victoria Meredith
Thank you for doing this! Love you!
$20
Rixon Fam
Go Bec! 🥰
$11.92
Ashley Carroll
Good luck Bec!
$11.92
Amanda Lougheed
What a beautiful way to help your sister and those suffering from kidney disease. Xx
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Well done Bec