Support Tracey, Hayden & Lucy with ongoing medical expenses

Hi my name is Bec and I’m doing this to help take some financial burden off my friend Tracey and her partner Hayden so they can focus on their little daughter Lucy.

Hopefully Hayden can take some extra time off to be in Sydney over the next 3 months with Tracey & Lucy. As well as help with ongoing costs associated with Lucy’s medical condition and living expenses.

Lucy’s story

Lucy was born 3/6/2024 Due date 6/7/2024. She arrived four weeks early. I was sent to Westmead on the 25/5/2024 to await her arrival. We were told at that time that there was a big concern for her lungs as they were very small. I came in on the 3rd June to have a check up and was rushed in for an emergency c-section. Hayden had returned home to work and had to rush back to Sydney.

Once born Lucy was intubated and taken to the NICU straight away. She had a pneumothorax and required a chest drain which was removed but needed to be reinserted at the first surgery as it had again collapsed. We were told to prepare for the worst and that she was critical and may not make it through the night. The first few weeks were very touch and go and Lucy required multiple transfusions and surgeries. She was taken in for her first emergency surgery on the 8th June at six days old. She has now had five surgeries in total only two of which were planned.

After six weeks of surgeries and a multitude of testing we received genetic testing and we were given a diagnosis of visceral myopathy (MMIHS). https://www.mmihs.org/about-mmihs/what-is-mmihs/

Lucy will need to be on TPN for life. She currently has a GJ tube and will be tube fed as well as being on TPN. She also has a stoma and a vesicostomy which allows her to void her bladder. We have been told to prepare for at least another three months to be staying in hospital. Hayden has had to return to work and unfortunately I will be unable to return to work or home until we are able to bring Lucy home. We are hoping to be home by Christmas but it all depends on how Lucy progresses. I will need to be on the ward with Lucy as much as possible. Hayden has been travelling back and forth every weekend to be with us.

18th June first hold - two weeks and 1 day old

2nd July - extubated and placed on CPAP

25th July - hi-flow

No oxygen support - 10th August

Back on CPAP and then hiflow due to infection 24/8

No oxygen support 9/9

Multiple suspected sepsis episodes requiring multiple rounds of antibiotics.

Please support Tracey & Hayden who are a local family to Orange NSW.

Thank you.