Amelia’s journey

Hi, I’m Lee. Fundraising for my niece Millie for her kidney transplant - this amount will aide in accommodation after her transplant (12 weeks in Brisbane). $8,000 saved our end so far but time has beaten us and accommodation prices are crazy expensive with minimal support - See details below of my sister Ness’ journey will Millie.

From birth to 17 years old, Amelia was a normal healthy young girl who danced 4 times a week and then would came home and continue to work on her flips, cartwheels and dance moves she needed to improve on. Amelia is an animal lover and always puts other people before herself. She is just a beautiful soul.

By accidental findings from a random blood test to check her iron, Amelia’s renal journey begun.

We were in shock! Amelia’s blood tests revealed her urea and creatine were not within normal limits. At the time Amelia was going to the gym and was having protein drinks. Stopping the drinks was immediate and our wishes for it to be just that was not to be had. Further scans needed to be undertaken. First more blood tests, ultrasounds and then full body scans. The ultrasound confirmed Amelia’s kidneys had lots of cysts on them and were not the regular size for her age. Amelia is tiny and short and the doctors could not understand how such big kidneys were in a tiny body.

Within the week we had a specialist come up to visit that took biopsies of organs which then Amelia was booked into. This was not a nice procedure for anyone let alone a young healthy girl with no other signs besides her bloods.

Off to hospital we went and biopsy taken of her kidney. When 6 people enter the room and start talking you know something is not right so the results are what we feared, abnormal kidney tissue.

The renal team then referred Amelia to the Brisbane transplant team. Yes, now in more shock we were linked into the transplant team and also Amelia had further blood tests from the DNA team.

All teams have been amazing from her GP to her renal doctor to the renal specialists and transplant team.

Our adventure started. Amelia was diagnosed with recessive polysistic kidney disease. However, from the Brisbane work up for transplant it became evident that Amelia’s kidney disease is a mystery.

The renal team have not seen a healthy 17 year old who has no signs of kidney disease before. Usually children often die in utero or need a transplant within the first week of birth. Amelia was 17. So like any mum I got the work up to donate my kidney to my daughter. We were also blessed that a very close friend also wanted to donate his kidney and started to get the work up. Unfortunately he was not compatible. Still very thankful of this beautiful gesture our prays were answered, I, mum, was a match. So off I went with my tests.

Every month since that day (over 2

years now) Amelia has had to have monthly blood tests and regular follow up with GP and Renal Doctor. The DNA team are still working on finding what type of kidney disease Amelia has as her kidneys work differently from renal patients. Amelia has had a number of hospitalisation due to her cysts popping. This then causes irritation, pain and bleeding. Anytime Amelia gets covid or the flu her kidneys decide they are not happy and play up where she needs more fluid flushed through her system. Amelia’s body uses potassium so she needs to be on tablets. Amelia has no other restrictions.

Currently Amelia is in stage 5 renal failure and her fatigue has increased where she has had to cease working from her Dental Aasistant role to help and lengthen the time before transplant. Thankfully Amelia does not need dialysis as yet but she is on a very fine line with that.

December appointment with the transplant team for final confirmation that I can be her donor, with procedure scheduled for

February 2025. This means a minimum stay of 12 weeks in Brisbane to be close to the transplant team.

19 years ago I carried her in my tummy for 9 months now she will carry a part of me in hers.

The journey continues. Love Nessy.