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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 9 months of age Flynn’s parents noticed that one of his feet looked a bit swollen and a couple of the blood vessels were raised. They took him to the doctor on Saturday morning thinking perhaps he had been stung by something. The doctor sent them to the local hospital, who sent them home again: but Flynn’s mum trusted her instincts and took him to Princess Margaret Hospital in the early hours of the next morning. He was in the Intensive Care Unit by Sunday evening with uncontrolled extreme hypertension – his blood pressure was around 250/180!

About 4 months later, just 2 days shy of Christmas the family received the devastating news that Flynn had been diagnosed with a rare form of vasculitis called Polyarteritis Nodosa. Flynn started chemotherapy and other immunosuppressants that same day, and required surgery to have a port inserted in his chest to receive the medications.

Polyarteritis Nodosa is a form of vasculitis. It is a disease that affects the medium sized arteries throughout the body. In Flynn, the condition has affected several organs and his legs, which has led to the loss of one of his kidneys and significant damage and loss of growth to his legs and feet. It has also affected his arms, tummy, and gall bladder. He has experienced a number of blood clots and severe nerve damage and pain requiring heavy pain relief.

Over the next two years Flynn received several different types of chemotherapy, but the disease did not respond to treatment and continued to progress. Flynn’s immune system had to be targeted with further doses of chemotherapy to the point that he became extremely immunocompromised and immune deficient.

Unfortunately, it was during this time that Flynn caught a simple virus, which led to a severe viral and bacterial infection in the brain and spinal fluid. As a result of the infection, Flynn lost his ability to walk and talk, to sit unaided, his eyesight was affected and he began suffering from seizures and confusion.

One year on, Flynn has amazed everyone that is involved in his care. With his parent’s help* he has relearned to walk and talk, but he is still developmentally delayed. The family is hopeful he will be able to access some rehabilitation to assist with his speech and motor skills.

*Because of the rare nature of Flynn’s condition he has not been eligible to receive community support, as his condition is not recognised.

Due to the infection and his immune status, Flynn’s chemotherapy had to be stopped. As his immune system starts to reboot, the family are watching and waiting to see if his condition will remain suppressed. The outlook for Flynn is unknown as the condition is so rare, and is not usually found in children. Flynn will need support as he grows as he is missing the key blood supply to allow his legs and feet to grow – he already experiences different sizes in his legs and feet as one side has been affected more than the other, requiring different sized shoes.

Flynn’s big sister Tilly has been by his side the whole way through. She has experienced a unique childhood and has gone for long periods of time without her mum or her dad, and her little brother. She has seen her little brother be whisked away in an ambulance or woken to realize her mum and brother have gone. She has experienced the sadness and the instability of growing up in a family with a sibling with a severe medical condition.

Despite this, Tilly is a bright and caring little girl who never complains. She sits patiently through appointments and long days on the wards and she doesn’t fuss when the attention is all on her brother. Unfortunately she has had to grow up far too quickly, and frequently misses out on playdates, parties, playgrounds and having fun.

Flynn likes Hotwheels (he receives a car for every treatment so he is building quite the collection), building Duplo, playing trains and tracks.

Tilly likes
building big kids Lego and rock painting.

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