{"id":6712,"date":"2018-01-12T16:02:21","date_gmt":"2018-01-12T05:02:21","guid":{"rendered":"https:\/\/blogs.rch.org.au\/news\/?p=6712"},"modified":"2018-01-12T16:02:21","modified_gmt":"2018-01-12T05:02:21","slug":"lilys-story-moving-on-from-the-rch","status":"publish","type":"post","link":"https:\/\/blogs.rch.org.au\/news\/lilys-story-moving-on-from-the-rch\/","title":{"rendered":"Lily’s story: Moving on from the RCH"},"content":{"rendered":"
\"\"<\/a>
Lily with RCH respiratory specialist A\/Prof John Massie circa 2000, and again in 2017.<\/figcaption><\/figure>\n

Born with the genetic disorder Epidermolysis Bullosa, Lily Tawk has been a regular visitor to the RCH throughout her life.<\/p>\n

When she was born, Lily\u2019s 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.<\/p>\n

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.<\/p>\n

\u201cIt\u2019s been really comforting to have the support of this team of people who know me and know my history,\u201d Lily said.<\/p>\n

\u201cI 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\u2019s good to know that if something flares up they are all there to support me.\u201d<\/p>\n

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

\u201cDr Massie has really driven that push to get me set up with doctors who can take over my care now that I\u2019ve turned 18.\u00a0 He\u2019s really supported us and he\u2019s determined to make sure we find the right specialists for me.\u201d<\/p>\n

\u201cI know I\u2019ll be seeing a new group of doctors from now on, but it\u2019s a good feeling to know that all my doctors at the RCH are there in the background to support the transition,\u201d she said.<\/p>\n

\u201cThanks to my parents, I don\u2019t feel like I\u2019ve missed out on anything but I do have to be more careful than my friends about a lot of things. I\u2019ve just been really lucky to have enjoyed a pretty normal life so far and the support I\u2019ve had at the RCH has played a big role in that.\u201d<\/p>\n

For information on transitioning to adult healthcare, visit\u00a0www.rch.org.au\/transition<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Born with the genetic disorder Epidermolysis Bullosa, Lily Tawk has been a regular visitor to the RCH throughout her life. <\/p>\n","protected":false},"author":66,"featured_media":6733,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[8971,6],"tags":[],"class_list":["post-6712","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured","category-in-the-news"],"acf":[],"_links":{"self":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/6712","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/users\/66"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/comments?post=6712"}],"version-history":[{"count":3,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/6712\/revisions"}],"predecessor-version":[{"id":6736,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/6712\/revisions\/6736"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/media\/6733"}],"wp:attachment":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/media?parent=6712"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/categories?post=6712"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/tags?post=6712"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}