Taylor Barnes Heart Journey

Taylor was born with a rare heart condition - Left Ventricular Non-Compaction (LVNC) Cardiomyopathy, and her first few months of life were tough going, but she survived. She flourished; ran and played like any normal little girl. She loved to bounce and jump on her trampoline, and was a real dare-devil on her scooter. Her heart condition has always been managed with medications and regular Starship checkups.

Sadly, in the last 6 months her condition has deteriorated severely and she now also has Severe Mitral Regurgitation, Pulmonary Hypertension and Restrictive Cardiomyopathy which does not have a very good prognosis. Taylor is now 4 and a half years old (turning 5 in August) and has had to be admitted to Starship 7 times in the last 4 months due to Pneumonia and now Heart Failure and failing to thrive. She no longer has the energy to play like she used to. With recommendations and advice from her lead Cardiologists, the best and only option going forward is for Taylor to have a heart transplant. We are currently waiting to be accepted by the NZ Transplant Team to be put on the list.

The focus now is to get Taylor as healthy and strong as possible so when the time comes she can have the new heart she needs.

Its really hard for her parents Leanne and Mathew, and her 2 year old brother Jesse. They don't have a lot of money and the costs associated with having an unwell child are substantial. Leanne has had to give up work to be Taylor's full time carer. Money donated will be used to help the family so they don't have to worry about money and can concentrate on looking after Taylor and getting her well.

We all want the best for them and I know many people want to help.. but how to help?

One way is by donating money on Givealittle ....

Another way to help is to become an organ donor and/or spread the word.

http://www.donor.co.nz/

Thank you.