Warrior Mail

January’s Warrior – Riley

Riley is living with chronic lung disease, and is looks forward to celebrating his 7th birthday in January!

He was very sick as a baby and was constantly in and out of hospital. Then he started getting chronic ear infections, to the point where they would ooze puss 24/7. His ENT referred him on to the respiratory department, who discovered he has floppy airways that trap mucus in his lungs, and diagnosed him with CLD.

He has had many surgeries and ...

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November Warrior Mail – Xander & Lily

This month is a DOUBLE WARRIOR SPECIAL! Please write to both children to let them know how special they are.

Siblings Xander (10) and Lily (13) deal with chronic pain that would floor most people every day of their lives, thanks to a genetic disorder called Ehlers Danlos Syndrome (EDS). EDS is a connective tissue disorder resulting in faulty collagen – which is the body’s glue. Imagine building a brick house with PVA glue instead of cement, and you have an ...

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Brave Boy Brax

Even before he was born, Brax’s mum, Brooke and dad, Gary knew that their little man was going to have it tough with having only one kidney. Unfortunately this wasn’t the only health complication Brax would have to recover from. Brax was diagnosed with VACTERL association, a rare disorder that affects multiple organ systems, including the heart and kidneys. In Brax’s case he was born with one kidney, a heart murmur and a number of other birth defects. Brax also ...

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Tess’ Story

Tess was diagnosed with Acute Myeloid Leukaemia (AML) on 28 March 2018 at the tender age of 11. Her official diagnoses came from Fiona Stanley Emergency Department after a quick-thinking family friend (who works at the hospital) recommended heading straight to emergency after hearing her symptoms. Tess was rushed into ICU and although Tess’ parents didn’t know it at the time, the hospital did not think she would survive the night. Meanwhile, Tess’ older sister Ella was also in hospital ...

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June’s Warrior – Bodhi

Bodhi is a super sibling – an ordinary 7 year old boy who has seen and experienced many things that no child ever should.

In September 2016, Bodhi’s little sister was flown to PMH by the Royal Flying Doctor Service for an MRI, following which she was diagnosed with a brain tumour. The tumour can’t be removed because it’s attached to her optic nerve, so she is under treatment to stop it from growing. Because she no longer has an IV ...

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May’s Warrior – Joseph

Joseph is 9, and lives with autism and ADHD, for which he takes medication and has regular therapy. He has an inner ear disorder which makes him extremely prone to ear, throat and chest infections from the slightest illness, and has had 3 grommet operations, adenoid removal and his tonsils taken out. He’s spent time in ICU for pneumonia and recently had dental reconstruction surgery on his front teeth, but the worst of all was when he contracted Scarlet Fever. ...

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April’s Warrior – Aroha

Aroha’s mum is a nurse, so when Aroha was unwell for months with multiple hospital admissions for asthma and high fevers, she knew something was wrong. They were told it was just flu season, and tried several different medications and doctors before someone finally listened – and Aroha was diagnosed with Acute Lymphoblastic Leukaemia.

Luckily she was diagnosed early enough that her doctors were able to take some time to stabilise her before starting chemotherapy. Any longer waiting for a diagnosis ...

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March’s Warrior – Xavier

Xavier’s diagnoses began when he was just a toddler and suffered repeated dislocations of his elbow. He was diagnosed with Ehlers Danlos Syndrome (EDS), a genetic disorder of the connective tissues which causes joint instability and fragile skin. He was then diagnosed with ADHD at age 3 when he became increasingly violent and was unable to control his urges.

Xavier is now 9, and along with the EDS and ADHD also lives with Sensory Processing Disorder, anxiety, complex migraines, Postural Orthostatic ...

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February’s Warrior – Kyra

In February 2016, Kyra became unwell. She started getting fevers all the time and experiencing excruciating pain in her legs. She lost a lot of weight and always had dark circles around her eyes. She made several visits to the local hospital (2 hours from her home), where the doctors concluded she had a virus. But after a gruelling 6 weeks Kyra’s mum insisted she be transferred to PMH where she underwent an MRI, a bone density scan, an ultra ...

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January’s Warrior – Junior

Junior was born full term, a seemingly healthy 8lbs 5oz. Shortly after he was born, doctors noticed he wasn’t breathing properly and he looked quite blue. After stabilising him, they discovered he had a congenital cardiac anomaly and respiratory distress.

He had a major congenital heart defect known as Total Anomalous Pulmonary Venous Return (TAPVR), and was immediately rushed to Princess Margaret Hospital. At 6 just days old he had heart surgery to correct the defect – and then spent ...

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