13/07/2026
MEET A RARE DISEASE WARRIOR
Meet Dylan, our warrior this week. Dylan and the Tiana Leigh Lung Foundation have walked a journey over the last few years - about 10 years. Sadly Dylan's dad passed away suddenly leaving only him and his mom to carry on with this rare journey.
At first glance, Dylan looks like any other teenager. He has a wonderful sense of humor, enjoys learning about history, spends time gaming, and absolutely adores his pugs.
But behind his warm smile is a journey that few people could imagine. The beginning of a lifelong medical journey began at the age of three weeks, with countless hospital admissions, surgeries and years of searching for answers.
Today Dylan almost 17, lives with several complex and rare medical conditions:
Hirschsprung’s Disease: a rare condition where part of the bowl does not function properly, making it difficult for food to move through the intestines.
Congenital Cystic Adenomatoid Malformation (CCAM): A rare condition where part of the lung develops abnormally before birth, which can affect breathing and increase the risk of infections.
Ewing Sarcoma of the Mandible: a rare form of cancer that developed in Dylan’s lower jaw.
Autoimmune Pancreatitis (AIP): a rare condition where the body’s immune system mistakenly attacks the pancreas, causing inflammation and ongoing health issues.
Because of these conditions, Dylan relies on tube feeding for his nutrition and requires round-the-clock medical care. Every day brings new challenges, yet he continues to face life with remarkable courage.
Dylan’s mom describes him as thoughtful and incredibly resilient, and he has taught her what true courage looks like.
If you would like to help Dylan, whether through a financial contribution, Dischem or grocery voucher, medical supplies ie specialized nappies, tube feeds and feeding supplies, electricity etc, please send the foundation a whatsapp.
Every contribution, helps ease the burden for Dylan and his mom as they continue this journey together.
Together, we can ensure that families never have to face challenges alone.
The Tiana Leigh Lung Foundation exists to create awareness, inspire hope, and give rare disease warriors a voice.
Every child has a dream
Every family has a story
Every rare disease warrior deserves to be seen and heard, understood and supported.