rare diseases

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 ...

Continue Reading →
0

The Story of Marc

At 6 years of age, Marc, seems to have an uncanny knack or superpower of making everyone fall in love with him. Aptly nicknamed Our Blue Eyed Hero, Mum Bec and Dad Stuart say from the moment he was born and then later at his more regular visits at PMH, with his big blue eyes and blonde ringlets he ...

Continue Reading →
0

The Story of Imogen


Choosing just one favourite thing about your child is no easy feat for any parent. Brooke, mother to 5 year old Imogen, certainly found it a challenge. She told us:

“I love everything about her. She is perfect to me. Her smile, her giggle, everything.”

But when pressed to highlight Imogen’s superpowers, Brooke didn’t hesitate to talk about how much she admires Imogen’s ...

Continue Reading →
0

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 ...

Continue Reading →
0

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 ...

Continue Reading →
0

October’s Warrior – Leila

When Leila was 4, she was diagnosed with Mucopolysaccharidosis type 4 (MPS IV) also known as Morquio A Syndrome: a rare progressive condition that mainly affects the skeleton. The life expectancy of people with MPS IV depends on the severity of their symptoms – severely affected individuals may survive only until late childhood or adolescence. Those with milder forms of the disorder usually live into adulthood, although their life expectancy may be reduced. Spinal cord compression and airway obstruction are ...

Continue Reading →
0

The Story of Rayaan

 

Heroism is not constrained by age or size. Rayaan, sometimes known as Little Buddha for his chubby appearance and calm nature, was a happy, healthy baby boy until he stopped breathing two weeks after his first birthday. He had no history of serious illness, there was no warning. It was terrifying for his parents to watch the emergency treatment ...

Continue Reading →
0

September’s Warriors – Flynn and Tilly

This month we’re running a Double Warrior Special! Please send individual cards to each child to show them how inspiring they are!

Flynn is an enthusiastic almost 4-year-old boy who loves to show affection and tells everyone he sees about his interest in cars. He has a big sister Tilly who has just celebrated her 5th birthday (her first one not celebrated in the hospital). They have a very close sibling bond and she likes to help with his care everyday.

At ...

Continue Reading →
0

June’s Warrior – Tayte

When Tayte was 3 1/2, he came down with an ear infection – but he became so unwell that within 4 days he was admitted to ICU at Princess Margaret Hospital. There he underwent an MRI and lumbar puncture which provided an official diagnosis – Longitudinally Extensive Transverse Myelitis (LETM). During his stay in ICU, his lungs collapsed and his parents were told he had developed severe pneumonia. After a 10 day stay he was released from ICU onto the ...

Continue Reading →
0
Page 1 of 2 12