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Rubi's FSGS Journey

Rubi was diagnosed with Collapsing FSGS in May 2017 when she was 2 1/2 years old. Page managed by parents. Her face was very swollen, and her eyes almost closed.

This is Rubi, 7 years old and the apparent, boss of our house. Rubi is bright, funny, amazing, feisty, strong and stoic. On the morning of Wednesday 26th April 2017, she woke and crawled into bed with mummy for morning snuggles. A trip to the doctor turned into an emergency admission to the local children's hospital. From this moment Rubi's, her brothers and our family life would be changed in way

s we could never have imagined. Rubi has been diagnosed with FSGS (Focal Segmental Glomerulosclerosis). This is a rare condition which causes the filters in her kidneys to become permanently scarred and stop working. The outlook for Rubi is very uncertain. There is no cure for FSGS, only ways to try and alleviate the symptoms, slow down the damage and hopefully, hopefully achieve remission which lasts. She may not respond to treatment at all, and the outcome for most children diagnosed with this condition, at some stage in their lives, is complete kidney failure. This means there is a huge chance she will need dialysis and a transplant in the future. FSGS can come back after transplant. After an initial run of steroids to try and achieve remission, the doctors can now confirm that Rubi is steroid resistant and we move onto the next phase which is immuno-suppressants. Her kidneys are still functioning normally just now, which is a good sign and one that we hope continues for as long as possible, but we know that at some point it’s likely this will change. What we don’t know is if that change will start next week, next month, next year, 5 years, 10 years…

Over the last few weeks, the future for our family has changed. We don’t know if we’ll be able to do all the things we hoped for and dreamed of, we don’t know what kind of a life Rubi will lead and what path this condition will take our family down. We will try to remain positive, do normal family things and do everything we can to give Rubi and her brothers the best experiences we can while we are able to. We’ll post updates on the page of how things are going and how Rubi is doing. We want to share our story so that when Rubi is older we can show her all of this, let friends and family know how we're all doing, and also to raise awareness for what is a rare condition without a known cause or treatment.

14/06/2026

Just a few sore heads in Scotland this morning 🏴󠁧󠁢󠁳󠁣󠁴󠁿⚽️ managed to wake Rubi and her brothers when Scotland scored 🙈🏴󠁧󠁢󠁳󠁣󠁴󠁿
Can't imagine there will be much happening in this house today 🏴󠁧󠁢󠁳󠁣󠁴󠁿
There was a 'fans zone' at our local town hall last night, the atmosphere ❤️
https://www.facebook.com/share/r/18sFE5AwAp/

14/06/2026

It's silly o'clock here in Scotland 😴🌙 Rubi is tucked up in bed, much to her disappointment.
Hopefully she wakes to good news tomorrow morning 🏴󠁧󠁢󠁳󠁣󠁴󠁿
No Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿
No Party 🏴󠁧󠁢󠁳󠁣󠁴󠁿

https://www.facebook.com/share/r/14hDpzX8w3W/

08/06/2026

I am sure that Rubi's dialysis sessions would have a different vibe, just like clinic where she cartwheels in the waiting area 🙈

https://www.facebook.com/share/r/1D6P4CMdCs/

29/05/2026

⭐️ ⭐️

🥩FATHER’S DAY GIVEAWAY 🥩

This one’s for the steak-loving dads. 👑

We’re giving away TWO of our luxury Tasting Boards — stacked with flavour, and guaranteed to impress.

Each £45 board includes:
🔥 50-day aged Black Angus 8oz Ribeye, 7oz Rump & 5oz Fillet Mignon
🔥 Bone marrow stuffed with pulled beef short rib & brisket
🔥 Your choice of side, sauce & our iconic lettuce wedge

To WIN for your table:
✔️ Like this post
✔️ Follow our page
✔️ Tag who you’d bring with you
✔️ Share to your story for an extra entry

TWO winners. ONE tables. One seriously indulgent Father’s Day feast. 🥃🍖

Winners will be drawn at random on Monday 15th June at 5pm and noticed directly by our management team.

Do not reply to anyone else and do not click on any links❌

https://www.millerandcarter.co.uk/fathers-day #/

26/05/2026

Bon Voyage Rubi!
Ru, heads of to join her primary school friends on their P7 residential trip.
Another milestone bagged and one that I feared she would miss due to some kidney drama.
School have been fantastic and I am grateful they have taken time to have staff trained to set up her gastrostomy feeds and administer her meds.
I will however, be close at hand just in case there is any challenges.
Good make memories ❤️

18/04/2026

Well, it was very much worth the wait!
The tattie is actually a frikkin great tattie and in Rubi's words, 'it's bloody brilliant, fantastic and so good'
Had a wee chat with Spud Man to about CKD, genuinely fantastic guy

Blood supplies running low amid severe snow and freezing temperatures

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/

Blood supplies running low amid severe snow and freezing temperatures Supplies of six out of the eight different blood groups are currently needed across Scotland.

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Rubi's FSGS Journey

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