Community
25 February, 2021
Rare friends band together
SUFFERING from a debilitating disease is never easy, but when it’s a rare disease that affects less than one in 10,000 people, it can be an even more isolating experience, and diagnosis can be difficult.
That’s why Rare Friends Far North Queensland has created a community of supporters for Far North Queenslanders affected by rare conditions.
This Sunday morning, February 28, the organisation will hold their annual Fun Run, Walk and Ride to support locals affected by rare disease and commemorate International Rare Disease Day.
This year the organisation has two local ambassadors: Sebastian Leonardi, who has Juvenile pilocytic astrocytoma (JPA) and Zara Walton, who has Loeys-Dietz syndrome.
Sebastian’s symptoms first started when he was just six months old, but doctors said he was healthy and it took more than 18 months before he was diagnosed.
At age two in January 2020, after Sebastian lost some movement in his left hand and arm, an MRI at the Cairns Hospital revealed a tumour the size of an orange in the middle of Sebastian’s brain, a type of cancer rarely seen in someone so young.
What followed was eight hours of brain surgery, 99 days in the Children’s Hospital in Brisbane and 16 chemotherapy treatments, with many complications including a major anaphylaxis reaction to the chemotherapy, diabetes insipidus and a range of hormonal health issues.
Thanks to the treatment, Sebastian’s tumour has shrunk, he is free of diabetes insipidus and he has regained the skill of walking through intensive therapy. There is no cure or remission for his diagnosis.
The second local ambassador is Zara Walton, who has Loeys-Dietz syndrome, an aggressive connective tissue disorder that was only identified in 2005.
Since childhood, Zara has been living with constant chronic pain, fatigue and lethargy. She bruised easily, fractured a hip simply from walking, and suffered severe degeneration and osteoporosis in her bones and joints that is usually only seen in 80 year old patients at the end of life.
The reason for all her mysterious health problems was only identified in January last year when she was finally diagnosed with Loeys-Dietz.
She has also been diagnosed with osteoporosis, osteoarthritis, Thoracic Outlet Syndrome, and Postural Orthostatic Tachycardia.
Zara hopes to raise awareness for Loey’s Dietz Syndrome whilst trying to navigate her pathway forward with her condition.
The fun run will start at 8:30am on Sunday at the Cairns Esplanade with three or five kilometre options, and the cost to enter is $15 for adults or $5 for children aged over five, with all proceeds gong to help local people with rare diseases.
There will be lots of great prizes donated by local businesses, as well as a sausage sizzle, icy poles and drinks.
Pre-registration is essential. Visit www.rarefriends.org for more information and to
register.
