Rubi's FSGS Journey

16/03/2026

Stories like these really help to highlight the importance of kidney donation.
We attended an info session recently, and was so inspiring listening to those who donated and also received a kidney. Especially, those who just decided to help someone else, a complete stranger, those are one unique individual. Living donation can come via direct donation, kidney sharing schemes or altruistic. However many of those waiting still wait have to wait until the right kidney comes available from a deceased donor.
Be sure to talk to your loved ones about donation.

An Essex mum wrote to her local paper with a kidney donation appeal, and got more than she expected.

13/03/2026

🌎 World Kidney Day 🌎
A world we were catapulted into in 2017, when our daughter Rubi, then aged 2, was diagnosed with an extremely rare kidney disease, Focal Segmental Glomerulosclerosis (FSGS).
Initial diagnosis came with poor prognosis of, dialysis and transplant within 18 mths. Rubi had other ideas! Despite it being rocky at times, she has made her own path with this disease, and been in remission since Oct 2020. We know the outcome will be dialysis and kidney transplant, likely several times in her lifetime. I can no longer donate my perfectly matched kidney due to a breast cancer diagnosis in 2023, but, Dad is second in line and has had some work up, but paused just now. He's not that good with needles, so this could be interesting!
Rubi is stoic and a warrior, who deals with everything thrown her way with courage, fight, and heck of a lot of sass! We know she will rock this ❤️
We set up a wee page to keep those around us updated, highlight kidney disease, FSGS and the need to talk to your loved ones about recycling yourself, and becoming an organ donor.
Please take a moment to check out her page, and give her a wee follow. Rubi will be 12 in November, starting secondary school in August and showing an interest in social media. She likes to check in on her page and I know she would be thrilled to get to 1000 followers, any shares are much appreciated xx

01/03/2026

Living with Kidney Disease holds so many uncertainties, we have most definitely lived a few of these, but right now Rubi is stable.
We know she will need a kidney transplant and become one of the 80% that waits, most often on dialysis to keep individuals alive.
If you have not already, please consider NHS Organ Donation. Have that discussion with family, and make sure they know your wishes 💚❤️ I have been on the donor list since a teenager, and my family are very much aware that when I die, any part of me that is still suitable can be given to someone else to allow them to live a life without the need for lots of medical interventions





https://www.facebook.com/share/18KSTXrM6S/

20/02/2026

Feeling very privileged to have been asked along again, to share my story and the importance of Maggies since my breast cancer diagnosis in 2023.
Maggie's Aberdeen Jail or Bail is an amazing event which helps raise vital funds, that are used to support families through cancer diagnosis in Aberdeen and surrounding areas.
Couldn't not get a selfie with one of my fav radio presenters, Claire Original 106 Aberdeen

https://www.justgiving.com/campaign/jailorbail2026?utm_medium=CA&utm_source=CL

18/02/2026

Something we have tried to install in Rubi, is not to let Chronic Kidney Disease define her. We continually encourage her to challenge herself and that it is her choice whether CKD wins or not. Hopefully these are skills she will carry in to adult life 💚

https://www.facebook.com/share/p/1NfRJCMPC3/

https://www.instagram.com/dylanjackmoran?igsh=bnBpZm15NTJmYWV1

14/02/2026

Happy Valentines Day 🌹 today is not just about flowers and chocolates, but importantly National Organ Donation Day. Why not give someone the most precious gift, life, and make sure your loved ones know your wishes. Please have that conversation 💚

Children like Rubi, will likely need more than one transplant. She will hopefully get dad's kidney when needed, after that she would need to wait for the right living or deceased donor kidney and this can sometimes take years.

https://www.facebook.com/share/17yyeVMabr/

Happy Valentine’s Day to you all from all of us.❤️

Today is also National Organ Donor Day - a day to increase awareness about organ donation.

There are thousands of people who won't be wishing for flowers or chocolates today, just a chance to live their lives.

Together we can help save lives. Will you agree to give your heart (and many other organs) this Valentine’s Day?

Please about your decisions with your loved ones, say and register your decision at NHS Organ Donation

06/02/2026

Spud Man raising awareness of Chronic Kidney Disease and life saving dialysis ❤️

https://www.facebook.com/share/v/1FGFXz4b63/

19/01/2026

Finally saw the advert with our super star! Several people had asked if I'd seen the advert. Saw it for first time last night and again today ❤️ blink and you will miss it

There’s a BBC for each of us. This is .Subscribe and 🔔 to the BBC 👉 https://bit.ly/BBCYouTubeSubWatch the BBC first on iPlayer 👉 https://bbc.in/iPl...

13/01/2026

Rubi relied on Albumin (a product from blood) in the early days of diagnosis.
Without this, the outcome would have been very different.
Unfortunately, I can not donate due to my own cancer treatments, otherwise I would.
If you are thinking of doing something different this year or something out of your comfort, please consider donating.
I could actually save someone's life 🧬 and rhat feeling knowing you have, nothing could compare ❤️

https://www.facebook.com/share/1ByHxm5Kcg/

Supplies of six out of the eight different blood groups are currently needed across Scotland.