Rubi's FSGS Journey

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.

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 #/

Bon Voyage Rubi! Ru, heads of to join her primary school friends on their P7 residential trip.Another milestone bagged a...
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 ❤️

Well, it was very much worth the wait!The tattie is actually a frikkin great tattie and in Rubi's words, 'it's bloody br...
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

Folk say it's just a tattie Spud Man, and yes, it may well be, but for us it's also about raising awareness of CKD and o...
18/04/2026

Folk say it's just a tattie Spud Man, and yes, it may well be, but for us it's also about raising awareness of CKD and organ donation.
We are waiting in the queue and not long now. Will let you know how they tasted 🥔

16/04/2026

Awe finally Spud Man is in our area. Going to get along this weekend for an affy fine tatty ❤️

When Rubi was diagnosed in April 2017, like many parents, I looked for answers and help through Internet. Not always bes...
15/04/2026

When Rubi was diagnosed in April 2017, like many parents, I looked for answers and help through Internet. Not always best, I know, but when you have to navigate a rare disease and have little else!
I read about clinical trials of this drug and thinking how amazing this would be if it became available to Rubi during her treatments. A glimer of hope 😔
Never thinking it would actually happen, yet here it is a medication specifically targeted toward treating protenuria and FSGS.
Now, all we need is for the UK to catch up and get this in to our treatment plan.
No harm in asking!

https://www.facebook.com/share/p/1Qas4y2uYL/

A breakthrough decades in the making! The U.S. Food and Drug Administration (FDA) has approved sparsentan (FILSPARI) for focal segmental glomerulosclerosis (FSGS).

This is the first-ever treatment specifically approved for FSGS, and marks a major breakthrough after years without disease-specific therapies.

This milestone is the result of years of collaboration across patients, researchers, physicians, and advocates who never stopped pushing for better care.

Join us Monday, April 20th at 8pm ET for a live town hall lead by expert nephrologists where they will discuss what this approval means for those impacted by FSGS and answer your questions.

To learn more and register for the town hall, click here: https://nephcure.org/fda-approves-sparsentan-for-fsgs-marking-a-landmark-achievement-for-patients-living-with-rare-kidney-disease/

Rubi has been off the scale this week with excitement, and finally the day is here her 4th Over The Wall Camp Rubi and h...
13/04/2026

Rubi has been off the scale this week with excitement, and finally the day is here her 4th Over The Wall Camp
Rubi and her brothers attend, all benefiting from activities and group sessions through the week.
Have the best time, making friends and memories at camp.

Rubi relied on Albumin (a product from blood) in the early days of diagnosis.Without this, the outcome would have been v...
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.

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Aberchirder
Huntly
AB54 7PY

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