Lily’s story: Moving on from the RCH

Lily with RCH respiratory specialist A/Prof John Massie circa 2000, and again in 2017.

Born with the genetic disorder Epidermolysis Bullosa, Lily Tawk has been a regular visitor to the RCH throughout her life.

When she was born, Lily’s condition caused intestinal problems that required surgery at the RCH. Since then, Lily and her family have been familiar faces at the hospital and, like many patients with a complex or chronic illness, she has been supported by a team of RCH specialists.

Now, having turned 18 and undertaking a science degree at Melbourne University, Lily is preparing to leave her doctors at the RCH behind and transition to adult care.

“It’s been really comforting to have the support of this team of people who know me and know my history,” Lily said.

“I might only come in once a year to see a lot of my doctors, like Dr Carden for my eyes or Dr Lucas for my teeth, but it’s good to know that if something flares up they are all there to support me.”

A/Prof John Massie has been helping Lily and her parents find the right specialist to manage her condition as an adult.

“Dr Massie has really driven that push to get me set up with doctors who can take over my care now that I’ve turned 18.  He’s really supported us and he’s determined to make sure we find the right specialists for me.”

“I know I’ll be seeing a new group of doctors from now on, but it’s a good feeling to know that all my doctors at the RCH are there in the background to support the transition,” she said.

“Thanks to my parents, I don’t feel like I’ve missed out on anything but I do have to be more careful than my friends about a lot of things. I’ve just been really lucky to have enjoyed a pretty normal life so far and the support I’ve had at the RCH has played a big role in that.”

For information on transitioning to adult healthcare, visit

One comment for “Lily’s story: Moving on from the RCH”

  1. Jess Sumpter

    Thank you for sharing your story Lily. Our daughter is 1.5 years old with Eb. We hope she can grow to be as beautiful and happy as you

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