A community of supporters for Far North Queenslanders affected by rare conditions.
3 or 5km options (or show your support from the marquee)
$15 Adults, $5 kids over 5.
Lots of great prizes donated by local businesses
(you must pre register to be eligible)
Sausage Sizzle, Icypoles and drinks.
Loeys-Dietz syndrome” is an aggressive connective tissue disorder that was only identified in 2005, previous to this, those affected had symptoms that they could not associate to a particular disorder or were misdiagnosed as having Marfans Syndrome.
Connective tissue is found throughout the body, Loeys-Dietz syndrome effects the heart, blood vessels, bones, joints, skin, and internal organs such as the intestines, spleen, and uterus which can result in life threatening aneurysms of the aortic root and throughout the arterial tree. Individuals diagnosed with LDS have a predisposition to develop aortic tears and ruptures at sizes not thought to be dangerous to the general population.
Zara, who was only diagnosed with Loeys-Dietz in January of last year has been living with constant chronic pain, fatigue, lethargy non trauma fractures, hyper mobility and subluxations of joints and substantial neck and spinal deformities. She also has been diagnosed with osteoporosis, osteoarthritis, “TOS” Thoracic Outlet Syndrome, “POTS” Postural Orthostatic Tachycardia.
Zara hopes to raise awareness for Loey’s Dietz Syndrome whilst trying to navigate her pathway forward with her condition.
Zara - Loeys-Dietz syndrome
Sebastian - Juvenile pilocytic astrocytoma (JPA)
At 6mths old Sebastian suddenly stopped sleeping during the night, It continued for 18mths then he started waking in pools of sweat during the night. Doctors said he was a healthy, active, energetic boy who simply wanted to be awake.
In January 2020, after Sebastian lost some movement in his left hand and arm, an MRI at the Cairns Hospital revealed a large tumour in the middle of Sebastian’s brain. Diagnosed with Juvenile Pilocytic Astrocytoma (JPA) Sebastian had 8hrs of brain surgery Sunday 12th January last year. Treatment for his cancer was unique due to the size and location of his tumour (the size of an orange), almost never seen in children as young as 2. He spent 99 days in the Children’s Hospital in Brisbane, returning for a total of 16 chemotherapy treatments. He suffered a major anaphylaxis reaction to the chemotherapy, endured 2 additional surgeries, and many complications including hormone deficiencies, diabetes insipidus, adrenal gland failure, pituitary gland disfunction and hypothalamus related health issues.
Now, in 2021, Sebastian’s tumour has shrunk due to chemo and surgery. He free from diabetes insipidus and his left side hemiplegia has improved so much that we only see the physiotherapist, speech therapist and OT every 6 weeks. He has regained the skill of walking through intensive therapy.
There is no cure or remission for his diagnosis.