he almost died at birth, now we live with chronic disorders
Learn more about Lyn & Jayden
The RED Trail founders
My name is Lyn Wong, I am a mother and full-time carer to my teenage son Jayden. I represent the bleeding disorder community as a female bleeder combined with my life experience understanding what it’s like to have multiple chronic conditions.
I get great satisfaction from creating a supportive and safe place for people to connect so they don’t feel alone on their life journey.
Jayden almost died at birth and lives with a severe bleeding disorder that is complicated by chronic inhibitors. This rare condition has resulted in regular hospitalisations as well as numerous ICU admissions over a 15-year period, we basically lived out of the hospital.
I gave up my career, lost a number of close friends and family as I devoted my life to caring for Jayden as we learnt to live with multiple disorders including autism, asthma and other various health complications.
How was The RED Trail created?
‘The RED Trail’ is a metaphor for fostering a happy pathway in life and to inspire others living with a chronic disorder to ‘NEVER GIVE UP’.
Our aim is create a sense of community, inclusion and awareness.
In 2014, my son Jayden & I, created The RED Trail to raise awareness about his chronic bleeding disorder; Severe Haemophilia A with Inhibitors.
We initiated the very first Haemophilia Walk in NSW with a 7km Challenge raising much needed funds to help others live a fulfilling life with this incurable condition.
Whilst being a full time carer to her son with severe multiple disorders as well as managing her own chronic illnesses, Lyn has helped raise over $4 million dollars in donations via various fundraising events and activities. Her mission is driving to achieve greater awareness in the community about chronic disorders to support families where it is most needed.
The RED Trail in the media
Jayden’s story of survival has raised lots of interest with a number of leading media publications featuring stories about him including
- The Daily Telegraph
- The Australian
- Southern Courier
- We Bleed Australia
- News Local
- Kids Cancer Centre
Get involved with The RED Trail
The RED Trail fosters a sense of community, inclusion and awareness by supporting families with chronic disorders in Australia
Do you, a friend or family member live with a rare or chronic disorder? Here’s your chance to have your voice heard. Help raise awareness by sharing your story and help others know they are not alone. Feel free to submit your story, attach some pictures and we will add you to our ‘Stories’ page
We are calling on corporate heroes to join us in making our event fun and successful for our rare and chronic disorder community. If you have any items you would like to donate to us for raffle draws, food & drinks for our events, children’s entertainment, as well as corporate donations, we would love to hear from you.
WHAT ARE CHRONIC DISORDERS?
The term chronic is usually associated with various illnesses and typically it is something that persists for a long time or is a constantly recurring condition. Typically it is used to describe a broad range of health conditions that can include;
- Chronic and complex health conditions.
- Mental illness.
- Genetic disorders.
These chronic conditions normally have these attributes;
- Have complex and multiple causes.
- May occur as a single condition in a person, or along with other diseases (comorbidity)
- Usually progress gradually.
- Can occur at any age, although they are more common as people get older.
- Can affect quality of life.
- Can create limitations and disability
- Are not usually immediately life-threatening, but can shorten life expectancy
Thankfully there are a lot of great treatments, therapies and management plan practices available that are helping people with chronic conditions to live longer.