Lily was born on 26.6.2013 with a condition called Hypoplastic Left Heart Syndrome. She is currently awaiting a heart transplant.
Lily was born on the 26th of June 2013 with a non cureable heart condition called Hypoplastic Left Heart Syndrome. Required are three palliative surgeries to ensure adequate blood flow around the body. Lily had her first open heart surgery (Norwood procedure) at just 32 hours old.
At 3 months old, Lily had her 2nd open heart surgery (Bidirectional Glenn).
At 10 months old, Lily faced her 3rd unexpected and extra open heart surgery (Tricuspid Valve Repair).
Lily went to Starship last week for a routine catheterisation and to see if she would qualify for the next needed open heart surgery, called the Fontan procedure. Unfortunately Pre-op tests showed Lily now has severe cardiac dysfunction with severe triscuspid regurgitation and therefore is not a candidate for the needed Fontan procedure which grants optimal blood flow to the body. Lilys heart is so severely damaged that even a catheterisation would be too dangerous and the only option now is cardiac (heart) transplantation. Lily is too small to receive a donor heart in New Zealand and the only possible place now is Melbourne. Lily and her family must move to Melbourne in order to be placed onto the transplant list and also for Lily's safety, she needs to be in the right place in case a donor heart becomes available or she has a serious heart event and her heart needs extra support while waiting for a new heart. Lily's father Adam must give up his job to move to Melbourne and the family now needs our help to raise money for moving costs and living expenses while they race to save Lily. No one knows when a heart will be available or if Lily will have enough time to wait, but they need our/your support so they can be together as a family in this very intense time.
Lily has a new heart! 7 April 2016
We have the most exciting news to share with you! Lily has had her heart transplant in Melbourne and will soon be winging her way back to New Zealand.
Lily received the gift of life earlier this year! Thank you for all your support, donations, positive thoughts and healing vibes, we can't thank you all enough! It has been a very exhausting and difficult time, but we finally received the phone call and the wait ended, a new life has started, new hopes and new beginnings. We are so utterly grateful to the donor family, no words can describe how thankful we are, you are always in our hearts! Thank you!
We had to wait until we were able to share the most exciting news due to privacy regulations to protect the donor and receiver family, but here we go, thank you Jesse for a beautiful story about our miracle:
We are now on the hunt for a new home close to Wellington hospital so if you know of any warm, dry home (that will allow Lily's beloved dog too!) - please get in touch.
Thank you again for all your support - your donations made such a difference at a very difficult time.