Just wanted to take a moment to say thank you. To everyone who has donated, shared, supported us and shown so much love.
I also would like to thank Sander and Common Ground Omokoroa for the Spin for Kim & Callie fundraiser.
If you know me, I’m not often speechless, but I truly am lost for words.
🥹💜🥹💜
Horrible couple of days. Lots of pain and feeling very low. Still no news from Sydney or New Zealand. Gene testing being done on our son, after hubby’s dna came back positive for PRSS1 gene. It’s all very overwhelming 🥺🥺🥺
Sending love and thinking of you all❤️
Been a very quiet celebration today. We were hoping that by the time Callie got to 17 she would be on the other side of her TPIAT. Hopefully she will be celebrating her 18th birthday in a better physical/mental state!!
Happy Birthday Callie💜🎂
Thank you Adele 💜
One done last week, four done today. Two more in eight weeks. Another thing ticked off.
I hate that Callie is on so many meds. Yesterday she had a big flare up. Morphine, codeine and pain blockers kicked in as we headed into ED. So back home without going in. The PTSD she has sustained, over the last 4 years, going to ED is something that will be with her for a long time. So if we can keep her out of there then we are happy with that! 💜💜💜
So, not much to update on. Callie is feeling very, very low at the moment. She suffers with her mental health, which is caused because of her physical health. These days are some of the hardest days. We are surrounded by an amazing support team. Which we are so thankful for. But some days you just need to stay in bed, snuggle down and watch silly cat videos. Preferably with your own cat!!
So, because there is a possibility that during surgery they will remove Callie’s spleen, we have to get all her vaccinations up to date. This is a precautionary measure and hopefully because she is young and hasn’t had any other major surgeries the spleen won’t have to be removed.
If you are interested in what a PRSS1 gene mutation is. I have a link below for you to read. It’s a bit lengthy. In Laymen’s terms. The enzyme it produces, should form outside the pancreas. With the mutation, it stays in the pancreas and auto digests the pancreas.
This is just a small window into the daily meds Callie needs. There are some days this really hits me because of what we are pumping into her body. But, there is hope that after the operation she will be weened off all these opioids 💜💜💜
I am feeling very overwhelmed and loved. You are all very much appreciated and no matter what I say it will never be enough 💜💜💜
❤️❤️❤️❤️
We have just spoken with the transplant doctor at Westmead Hospital. She is happy that Callie’s Islets (insulin producers) are healthy and can be harvested. This means she will put her case forward for procedure to be carried out. One step closer!!!
Right now, our family is in limbo, waiting for the New Zealand health system to accept responsibility for funding Callie’s surgery. We have started speaking with the surgical team at Westmead Hospital in Sydney and have been told it could be another 5–6 months before everything is in place.
In the meantime, the financial pressure on our family is becoming increasingly difficult. Callie’s illness continues to mean time away from work, unpaid leave, travel to medical appointments, medication and the many unexpected costs that come with caring for a child with a complex, chronic illness.
Once her surgery is approved and scheduled, we will need to spend time in Sydney supporting Callie through the operation and a long recovery. This will bring additional costs for travel, accommodation, food and time away from work.
We are not asking for donations to fund Callie’s surgery. We are asking for help easing the financial burden on our family while we wait for her operation and support her through recovery.
Every donation, no matter how small, will give us some financial breathing room so we can focus on what matters most — being there for Callie.
After four years of pain, uncertainty and countless hospital visits, we simply want our daughter to have the chance to live her life without constantly fearing the next flare-up.
Thank you for reading Callie’s story. Whether you donate, share her page, or keep Callie in your thoughts, your support means more than we can put into words.
