Looking up at the ceiling during tough procedures, Siddiqah and Azraqee are reminded of three powerful mantras: “I am strong, I am fantastic, I am brave”.
The siblings, originally from Malaysia, embody these powerful words, which they developed with the support of the Child Life and Music Therapy Team at Sydney Children’s Hospital, Randwick (SCH).
Siddiqah, 11 years old and her brother Azraqee, eight years old, live with a connective tissue disorder called dystrophic epidermolysis bullosa (DEB), which causes pain likened to that of third-degree burns. In 2017, needing access to better medical care for their condition, they travelled to Australia on a medical visa.
For children living with DEB, friction from even the simplest things such as shoes, clothes, or toilet paper which is too rough, causes the skin to blister and the development of wounds. They are often referred to as butterfly children because their skin is as fragile and delicate as a butterfly’s wings.
Siddiqah and Azraqee’s condition is severe and causes blisters to grow in the middle layer of their skin and inside their bodies, in places like their mouths, esophagus, and eyes. When the blisters heal, they cause painful scarring.
“I still remember the first time these beautiful siblings came to the EB clinic. They were both quiet and shy, but it wasn’t long before their faces lit up with enthusiasm as I got out some craft materials,” said Janet Burke, Manager Child Life and Music Therapy at SCH.
This extract of the article was uploaded courtesy of The Sydney Children’s Hospital Network. Please read the article in it’s entirety HERE.