Ruby-Roses warriors megdhel Syndrome

Ruby-Roses warriors megdhel Syndrome Ruby-Rose was just 8 months old when she was diagnosed with mitochondrial disease-MEGDHEL syndrome.

Mitocondrial disease awareness week 18-24th September! Our daughter Ruby-Rose has mitocondrial disease-Megdhel syndrome....
23/09/2023

Mitocondrial disease awareness week 18-24th September!
Our daughter Ruby-Rose has mitocondrial disease-Megdhel syndrome.
Today big monuments across the world will light up green to raise awareness.
Roo is a one year old little girl who got diagnosed in may 2023 after a long fight with hospitals.
We don’t know how long we will have ruby in our life for but each and every day we will show her just how loved she truly is my little princess warrior.
🩷🩷🩷🩷

Hi and welcome to Ruby-Roses warrior page. For those who do not know I am ruby and I’m nearly 9 months old. I’ve always ...
30/05/2023

Hi and welcome to Ruby-Roses warrior page.
For those who do not know I am ruby and I’m nearly 9 months old.
I’ve always been poorly as I spent the first 3 months in nicu first at my local hospital then into GOSH.
A few weeks ago my mummy and daddy got my genetics test results which said I have a mitochondrial disease called megdhel.
That diagnosis means I won’t live past infancy they have said and I’m 1 in 14 children across the globe with this illness.
Please help my family make amazing memories before that happens.
3 short years ago my older brother kyle also passed away from a rare brain tumour called DIPG.

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