Last May our daughter Maia was diagnosed with Nephrotic Syndrome, a rare kidney condition with no cure. She was 2 years and 10 months old, and after a week of back and forth with various medical professionals, she was admitted to hospital following tests showing her kidneys were leaking dangerously high levels of protein. 

Luckily she has responded really well to the steroids (side effects aside), but unfortunately she is one of the 25% with the disorder who unluckily become a ‘frequent relapser’, and she has already suffered four further relapses. On the bright side, she should grow out of the condition by early adulthood.

It’s been a bumpy year getting our heads round the diagnosis and finding a new normal, all of which was made vastly more bearable thanks to the support provided online by NeST.

Not only do they offer support, information and meet ups around the UK for those with the condition, and their families, they help to fund incredibly important research to better understand the disorder and to test new treatments, with the hope of one day finding a cure.

Like the rest of the world, it’s time for yet another ‘new normal’ as we stay home to keep Maia safe (she is immunosuppressed due to taking steroids for months) and my plan is to complete 22,600 skips in 40 days in the garden (by 4th June).

The usual challenge is 1,000 steps a day for 30 days, but I’m giving myself a little wriggle room to accommodate the British weather! I am not even a little bit fit, so this really is going to be a challenge. I also keep tripping up on the rope! This could be interesting...

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