All Stories

Tom & Tayla’s Cystic Fibrosis Journey

Both Tayla & Tom have been patients of RCH for 11 years now. Tayla was first born in 2010 and at 4 weeks old was diagnosed with Cystic Fibrosis. 2 years later Tom was born and also diagnosed (before birth).

Tayla spent a large portion of her first years of life on Sugar Glider for regular 3 monthly CF tune-ups and treatments, but also struggled with gastrointestinal issues such as gastroparesis and DIOS, has a PEG, and has had well over 60 general anaesthetics/surgeries in her short 10 years of life.

Tom has been fortunate enough to have not had as many admissions as his sister, but still regularly visits RCH for both CF and allergy clinic appointments.

Tayla was in the Herald Sun for the Good Friday Appeal at just 2 years of age in 2013. A star on the ward at a very young age!

In 2018, Tayla & Tom began taking Orkambi which has dramatically changed their CF path. Tayla has not been admitted for well over 3 years for CF treatment but still classes RCH and Sugar Glider as her second home!

We are always so grateful for the wonderful care the respiratory team and sugar glider nurses have given us over the years and they hold a very special place in our hearts 💜🧡💚

Our Newsletter

Everything Good Friday Appeal, straight to your inbox. Get more information about your impact and how to get involved.