01/09/2026
A little/big update 💛
I know it’s been a while since I posted. I’ve just been spending time with Phoebe and trying to work out what our next step is.
At the beginning of all of this, I had consultations with the team here in Melbourne, a surgeon in Sydney, and Dr Superina in Chicago, who has the most experience in the world with this particular super rare condition. The consultations varied greatly in their expectations of what surgery could achieve for Phoebe. I always wanted to go with the surgeon who had performed the most of these procedures and who gave me the most hope for Phoebe’s future which is why I started the fundraising.
Unfortunately, I haven’t been able to raise enough to get Phoebe to Chicago. Dr Superina did offer another overseas option that was more financially achievable, but unfortunately that hospital is not equipped to manage patients as complex as Phoebe. When that option fell through, I had to go back to square one and look at Australia again.
After several consultations, Phoebe and I recently travelled to Sydney to meet with a surgeon in person, and I’ve made the decision to proceed with him.
He has been very upfront with me about the risks, including that he may decide it is too risky to proceed once he is operating, or that he may not be able to complete both stages. But he spent a lot of time with me explaining things I didn’t even know I didn’t know, and I felt reassured by his experience with complex patients and other complex surgeries.
I also can’t keep waiting indefinitely. The sooner this surgery is done, the better the potential long-term outcome for Phoebe, and I have to make the decision based on what I can realistically do for her now.
I feel very fortunate that the funds raised mean I have the option to relocate to Sydney (temporarily)for the two surgeries and travel back and forth for Phoebe’s ongoing care. This surgery requires years of monitoring, and if it doesn’t work, or if it is too risky to proceed, I may have to look again at overseas options.
There is also the possibility that Phoebe could need to be considered for a liver transplant in the future, this would depend on her being medically suitable but if that were to become a possibility, I would want her to continue her care with the same team in Sydney.
This isn’t necessarily the outcome I originally wanted or my first preference, but I’ve investigated the alternatives, Phoebe still has such a lomg medical journey ahead of her, including more heart surgeries as well. I have had to make the decision based on what I believe is the best option for her that I can realistically access now.
I’ve closed the GoFundMe and I may close this page soon too since it was created for the fundraising. However, I will share the occasional update via the GFM page, especially so that other families in similar situations can find us, just as I was able to find families which was rely helpful for me.
If you’d ever like to know how Phoebe is doing, you’re more than welcome to check in there or message me directly.
Thank you so much to everyone who has helped Phoebe and me get to this point. Especially to those who helped me fundraise, friends, friends of friends, businesses who donated their time, goods, services, venue, event, ideas, support, etc. I'm truly so grateful.
Although we haven’t raised enough to get her to Chicago, your support will will take away the financial stress that will come with everything ahead of us. I’m so incredibly grateful, and I hope I can repay that support one day. 🫶🙏💛
