Not long before Ava died I was put in contact through an international Lymphatic Malformation online forum with Jessica who is also from NSW Australia. We were told Ava had a large cystic hygroma which in the weeks to come we would find out she had more than 1 and just how big and extensive they were. Cystic hygroma is also known as lymphatic malformation. I had trying to find someone who lived in Aus for weeks. As this condition is very rare it is difficult to find children who live with it. Many babies do not survive the pregnancy, especially in extensive cases such as Ava's. Her daughter Amelia was born with cystic hygroma / lymphatic malformation. She is an amazing little girl who has been through so much. She is only 16 months old and has so far had 17 surgeries. She has been in hospital for 8.5 months of her whole life so that's half the time she has been here. Her mum cares for her 24/7. She has a tracheostomy as her airway has been compromised by the CH and is fed through her stomach through a gastrostomy as she is unable to eat. She gets sick very easily as it effects her immune system. She is currently in hospital at the moment. It is a lifelong condition.
Below are some links I would love you to look at to gain some more information on what life is like for Amelia and her family living with this. You can also support Amelia and children just like her through the bandaged bear appeal that has been set up on behalf of Amelia.
This is a short video where about halfway through Amelia's family is shown discussing Amelia and what the hospital has done for them
Next week on the 6pm news on channel 7 they are also being featured in a story. Once the details are confirmed about what night I will post about it.