Rubi's FSGS Journey

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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. 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.

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 🏴󠁧󠁢󠁳󠁣󠁴󠁿

24/12/2025

Rubi and her family would like to wish all family, friends and followers a very Merry Christmas 🎄 🎅

07/12/2025

This wee lass is the same age as Rubi, and I can't imagine what it must be like going through this. I too would do absolutely everything and anything to make sure our Rubi had every possible treatment, even if that meant taking her around the world.

https://www.facebook.com/share/17V2VSHhBi/

Sophia Wilson, who was diagnosed with acute myeloid leukaemia in July, needs specialised treatment from the US.

14/11/2025

Happy 11th Birthday to this wee rocket, you definitely keep us on our toes. Rubi, you are a crazy chickadee, with a heart of gold, who loves to chat and makes sure you get all your words in for the day 🤣
We love you lots like jelly tots, keep being you xx
This weekend your sharing your birthday celebrations with Granny Brown, who's just a tad more experienced in life, at 70 🥳

09/11/2025

This story resonates with me a lot and Rubi symptoms on the lead up to her diagnosis as constipation and allergies.
The more stories that are told, the more FSGS is recognised and that people have more options for support.

https://eu.usatoday.com/story/sponsor-story/travere-fph-2025/2025/11/07/uncovering-fsgs-the-rare-kidney-disease-that-starts-with-a-silent-clue/87013201007/?fbclid=IwVERTSAN8uQpleHRuA2FlbQIxMABzcnRjBmFwcF9pZAwzNTA2ODU1MzE3MjgAAR4Yq3kxkb69sr_Mm-dXdp5QHA0pkYSR9JdZ0QUVxm9Mcp42dqRz9rn0YVL7iQ_aem_p_s_4XCvL0TpziDXdUsk5A

One family’s journey to an FSGS diagnosis and the simple warning sign they almost missed.

03/11/2025

FB knows and listens......Tonight myself, Taz and Sean attended an information session around kidney donation, at our local hospital. Specialists taked about the process of donation and individuals living with or around kidney disease shared their experiences. It's good to attend these events, they are helpful, and we have a rough idea for recovery for live donor. Hopefully Miss Rubi remains stable for a while yet, she has done for 5 years!

31/10/2025

https://news.stv.tv/east-central/scot-celebrates-kidney-transplant-to-save-brother-after-anniversary-of-treatment?fbclid=IwdGRjcANxUSxjbGNrA3FRGGV4dG4DYWVtAjExAAEeUmSbrLAhRHfydhomvU3gVDxP3Aggft9B_RgQYvFFGPVB_e2cDwwYV4fudlc_aem_bG9Vum4nWm5RFrgATxPD2Q

Harry Wilson says it was an instant decision to save his brother Gordon after he was diagnosed with kidney disease.

29/10/2025

Life on dialysis is tough, but if you have the right mindset, any thing can be achieved. Rubi has a gastrostomy and we have always been open about what the tube is. She has feeds sitting at the desk in school, by the road side on day trips, even on the beach. This teaches normality and makes it less alien to others. Also helps to give Rubi confidence with her own body, and she rocks it ⭐️

On holiday but still have to do the dialysis! It can be stressful but it is fun improvising - I didn't even realise I could still get down this low - Spudwife was speechless (quietest she's been for a while 😉😂 ) and it's well worth it to make memories with the family.

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Aberchirder

AB54 7PY

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