Projects

What is lymphangioma?

In November 2006 Olivia died from a rare disease called lymphangioma. But what is it?
Lymphangioma is one type of vascular malformation. Vascular malformations comprise a group of disorders varying from the more common lesions such as haemangiomas (which affect 1 in 10 children) to the rarest type known as Lymphangioma. Simply stated, Lymphangioma it is a malformation of the lymphatic system where excess fluid creates a mass internally.

This can be life threatening if located near a vital structure such as an airway. Sadly, for Olivia, her lymphatic system was secretly pooling fluids from the base of her brain through her chest cavity and down to her spleen. When diagnosed at 8 months, the internal mass was so extensive that Olivia’s airway was severely compromised. The available treatment was unable to reduce the mass and surgery to remove the mass was not an option.

Vascular Malformations Research Fellowship - Sydney Children's Hospital, Randwick

Touched by Olivia Foundation is proud to be the principal supporter of the Vascular Malformations Research Fellowship at Sydney Children’s Hospital, Randwick, launched at this year’s Butterfly Ball.

This collaborative project between Sydney Children’s Hospital, Randwick and the Centre for Vascular Research at the University of New South Wales will be lead by Chief Investigator Associate Professor Orli Wargon and conducted over three years commencing with the appointment of a Fellow in the Vascular Birthmark Clinic and a dedicated post-doctoral researcher.

This research group will initially investigate therapies which modify and/or prevent the growth of the infantile haemangioma as well as develop educational and support materials for families afflicted by these malformations.

It is our aim that this program will position Sydney Children’s Hospital as a Centre of Excellence in the research and treatment of vascular malformations and tumours in children from Australia and beyond.

More useful lymphangioma resources:

• http://emedicine.medscape.com/article/1296163-overview
• http://www.childrenshospital.org/az/Site1256/mainpageS1256P0.html