Amazing amelia

Our vibrant, funny and quirky Amelia was born with the rare disease of Lymphatic Malformation and has been in and out of hospital all her life, is now 10 years old... She wouldn't be here without the team at The Children’s Hospital at Westmead!

She couldn’t breathe on her own or eat on her own. A tracheostomy and gastrostomy followed soon after. Then we met Dr David Lord, Interventional Radiologist who specialises in Lymphatic and Vascular Malformations ... while it was very overwhelming for us, he took the time and effort to explain Amelia’s condition, the treatment that was required and how he could help. We haven't looked back!!! 

To date Amelia has had 43 procedures and too many to count anaesthetics and in March 2023 she was confirmed to have the PiK3CA gene and was an ideal candidate for a drug called Alpelisib which she is on now and keeping her condition dormant – which means less hospital stays. Amelia wouldn’t be here without the team at The Children’s Hospital at Westmead!

As a family we support his cause and participated in many projects in conjunction with the hospital such as appearing in videos, printed advertisements, mail outs, media, public speaking, setting up a Facebook support group for Australia and New Zealand, and fundraising over $200K specifically for the Interventional Radiology Department.

The reality is for some kids, childhood is far from what it should be. Instead of playdates there are appointments and instead of sleepovers there are hospital stays.  

No child should ever go through this, but those who do deserve our all.