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. 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. Her face was very swollen, and her eyes almost closed. 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 ways 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.

Wow! Rubi is in her final few months of primary school and will move up to Secondary School in August. I couln't visuali...
16/02/2026

Wow! Rubi is in her final few months of primary school and will move up to Secondary School in August. I couln't visualise this eight years ago, finishing Primary school without having had a transplant or even two. Occasionally I stop and think, how we reached this milestone, but feel extremely fortunate and greatful that we are here.

As part of end of Primary School celebrations, the pupils have a week of fun activities and also a residential trip. To help raise funds for these, we are selling lucky squares with a chance to win this fabulous Aberdeen Football Club bundle. The prize includes an Aberdeen FC top (11-12 yr), scarf, cap, calendar, ball and a huge hamper of sweets. Squares are £10 each. If you would like to buy a square please pop comment and a wee message and we can sort the details. Your support is very much appreciated, thank you

Happy Valentines Day 🌹 today is not just about flowers and chocolates, but importantly National Organ Donation Day. Why...
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

Finally saw the advert with our super star! Several people had asked if I'd seen the advert. Saw it for first time last ...
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...

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.

Would highly recommend Over The Wall Camp to young people and their siblings. Rubi thrives at camp, she loves the games,...
10/01/2026

Would highly recommend Over The Wall Camp to young people and their siblings. Rubi thrives at camp, she loves the games, fun, socialising and memories made.
I have no idea what or how Camp do it, but even the oldest asked me to sign him up straight of the back of the last camp ❤️🏴󠁧󠁢󠁳󠁣󠁴󠁿

https://www.facebook.com/share/16kfuWX8Bh/

06/01/2026

Happy New Year! 🏴󠁧󠁢󠁳󠁣󠁴󠁿🥳
Wow, 2025, where did you go. When I started looking back through the years photos, I realised just how much we packed in and how grateful we are that Rubi remained stable through the year, allowing her to make the most incredible memories.

Not much medical stuff, but a couple of additions!
💉 4 blood tests
💉 5 Micera Injections
🩻 an head MRI, diagnosis migraine
🩻an knee x-ray, diagnosis Osgood-schlatter disease
🪲 a tick removed from her shoulder 😲

Less hospital and kidney related illness means more time for socialising, something Rubi loves ❤️
⛺️ third Over The Wall Camp
🚶‍♀️ helped at Maggie's Aberdeen Culture Crawl
🎶 her first concert - Olly Murs
🎵 Katy Perry
🎙 Hannah Rubix as Taylor Swift
💿 Taylormania, Katy Ellis
⚽️ Aberdeen Football Club kit launch
📷 Susan Renée at Kingshill Studios - Superhero Photo Shoot
💧 Jet skiing & camel riding in Tunisia
🎯 Archery, axe throwing & throwbow, Action Adventure Activities
🐎 watching show jumping & Pony Club Games @ Scone Horse Trials

We surprised Rubi with a trip to Scone Horse Trials. The highlight, watching her riding instructor take 1st place in her jump round. Rubi is thriving at NMW Riding Academy, and has found the most amazing and incredible support and encouragement there. Her confidence is growing and has now attended a few Pony club day camps. She just loves being at the stables, and horses are her get away.

Gradually we have been encouraging Rubi to become more independent, preparing for secondary school, and adolescence. She can set up, connect and start her feed pump. She knows what medication to take and when. Understands what foods are kidney friendly and what to watch. Rubi can now stay over at friends, without us having to go, do these things and cramp her style.

As the year came to an end, I watched Rubi sing at her last Primary School Christmas Fayre. This journey of 'lasts' is going to be hard. Hogmany 2025 celebrations began with our family meal and trip to The Tivoli Theatre for Aberdeen Panto. We then celebrated and partied in to the night, seeing in 2026 with the most amazing group of friends, who we appreciate so much.

2026....lets see what you've got......

Lang may yer lum reek 🏴󠁧󠁢󠁳󠁣󠁴󠁿

Address

Aberchirder
Huntly
AB54 7PY

Website

Alerts

Be the first to know and let us send you an email when Rubi's FSGS Journey posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram