Thank youThank you so much, Rubi's quilt has arrived. It is absolutely gorgeous and perfect for her. Rubi loves it to and I think the pics show this x
The work and detail is just amazing. Rubi is one lucky girl and she has already made plans for where and when she is taking it to places.
The timing of it arriving was perfect too, as gave her a wee boost during what has recently been quite a challenging time.
Thank you again
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BiographyOne morning in April 2017, Rubi woke with puffy eyes and was severely swollen. The GP examined her, tested urine and made a call to our local children's hospital.
It appeared her kidneys were not working properly. After further tests she was diagnosed with Nephrotic Syndrome (NS), a rare kidney disease that mainly affects children and can be controlled with medications and something she would likely outgrow.
Described like a sieve, the filters of the kidneys had developed large holes in them and protein was leaking out through her urine. To reduce the protein spilling, dampen her immune system and stop it attacking her kidneys, high dose steroids were started. Months of steroids were hard, as her body struggled with the side effects including constant hunger, weight gain and the most challenging toddler tantrums loaded with steroid rage! Her immune system became compromised due to the steroids, which meant she had long periods of time isolated and out of nursery, due to infection risks. Her blood pressure was dangerously high causing headaches, she suffered with oedema where she gained over 2kg in fluid and had large levels of blood in her urine due to bleeding from her kidneys. Several blood pressure medications were introduced along with diuretics to help stabilise her.
Four weeks after admission to hospital and with no improvement, Rubi had a kidney biopsy which confirmed the NS was a symptom of an extremely rare kidney disease, Focal Segmental Glomerulosclerosis (FSGS) Collapsing Variant. We were told that protein leaking through was causing permanent scarring to the kidneys, progression to end stage renal failure would be rapid (likely within 18 months) and treatments included medications, dialysis and transplant. There is no cure for FSGS and after transplant there is around an 80% chance of disease recurrence. Immunosuppressant, Tacrolimus, was started in a further attempt to override her immune system. Rubi spent a further 8 weeks in hospital as she received intravenous albumin and sodium infusions to try and alleviate some of the symptoms of FSGS. After 12 weeks she was stable enough to be discharged home.
Fast forward 6 years and Rubi has carved her own path with FSGS, doing things her way and sometimes against the odds. Currently kidney function is around 15-18% and amazingly she has not required dialysis or transplant, but we know these are part of the treatment plan ahead. She has endured over 150 blood tests, dozens of cannulas and intramuscular injections. Unable to eat enough calories and nutrients, due to the metallic taste produced by failing kidneys, Rubi had a gastrostomy tube ‘Charlie’ inserted into her tummy in 2019, followed by another kidney biopsy in 2020.
Rubi is stoic with all that she faces and will happily show off her ‘Charlie’ button, telling people all about it and often wearing cut tops and bikini. She loves to dance, trampoline and cartwheels everywhere. Rubi hopes one day to compete in disability trampoline. She is very much a socialite, with an amazing, supportive group of friends, but beware once she starts talking it's hard to get her to stop!!
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