Annabelle

Annabelle’s journey began in August 2020 when, at the age of 9, she became seriously unwell with abdominal pain. She’d been enduring this pain on and off for a couple of years, but it was when the pain got worse causing lack of appetite, weight loss, fevers, and loss of colour in her face, that her mother Kylie, knew something was wrong. After two misdiagnoses, and a two-night stay at a local Gold Coast hospital, Annabelle was referred to the Queensland Children’s Hospital gastroenterology team for specialised investigation.

Numerous blood tests, ultrasounds, X-rays, an MRI and MRCP, a liver biopsy, removal of an enlarged lymph node from her groin, an endoscopy and colonoscopy later, Annabelle was diagnosed with the life-long auto-immune diseases Inflammatory bowel disease (Ulcerative colitis) and Primary sclerosing cholangitis (PSC) of the liver.

Ulcerative colitis is a type of inflammatory bowel disease that affects approximately 1 in 250 people aged five to 49 in Australia. This disease causes lining of the large intestine and/or rectum to become inflamed producing tiny ulcers on the colon. People diagnosed with ulcerative colitis commonly experience abdominal pain, bloody stools, diarrhea, fevers, rectal pain, weight loss and malnutrition.

Primary sclerosing cholangitis is a disease that affects the bile ducts in the liver. It causes inflammation and scars within the bile ducts making them narrow and have the potential to cause liver damage.

With regular health checks and medication, Annabelle is able to do most things her peers can do, and is looking forward to playing cricket this year, after missing out last year due to her new diagnoses. She also loves reading, writing, and playing her alto saxophone.

Annabelle can sometimes tire easily because of her conditions, and if she becomes unwell with a head cold or a similar infection, it can take her longer to recover because of her immune suppressant medication. Annabelle also needs to eat high calories foods to help her gain weight.

Kylie said she does sometimes worry about what lies ahead for Annabelle with her medical conditions, but she feels confident knowing Annabelle is under the care of the gastroenterology team at the Queensland Children’s Hospital.

“If there’s one thing I would say to other parents going through a similar journey, it’s to always trust your gut,” Kylie said.

“If your child is unwell and something tells you that the initial diagnosis you received isn’t quite right, get another opinion. My ‘mummy intuition’ kicked in and I knew something wasn’t right. I am so glad I trusted my gut as Annabelle may have had irreparable damage.”

Annabelle recently turned 10 and continues to take the ups and downs of her conditions in her stride – and always with a smile on her face.