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Youngster with rare kidney disease was misdiagnosed as suffering with hay fever

14 September 2020

A young mum, who did not leave her house for nearly six months to protect her son who suffers from a rare kidney disease, has completed a seven mile walk in her garden for a charity close to her heart. 

Chelsea walked seven miles round her garden while on FaceTime to her mum and aunty, who joined remotely 20 miles away to raise money for Kidney Research UK. 

Chelsea’s two children Olly, 5, and Bailey, 7, also completed a sponsored Lego challenge, building eight different bridges to help support kidney research, which she says is vital to save her son’s life. 

Chelsea with Ollie and Bailey
Chelsea with Ollie and Bailey

Chelsea said: “Olly has no immune system, so for me shielding during Covid-19 lockdown was no problem, it’s what you do as a parent to keep your child safe. 

“We didn’t go out of the house from March 15 until September. We got used to the routine and it was good feeling safe in the home. Mum does the shopping and I anti bac everything once it is delivered. Mum and I only chatted through the window which was hard as me and mum are really close. I miss her hugs!” 

So rare doctors thought Olly had hayfever

Olly has nephrotic syndrome, a rare condition that was diagnosed just before his second birthday.  

“Doctors originally thought he had hayfever or conjunctivitis because he had terribly swollen eyes,” Chelsea said. 

“However, the antihistamine medication given to him made no difference. The whole situation didn’t feel right. My mother’s instinct kicked in. He was a small boy and had a terribly swollen stomach and pains in his belly, so I went on to Mumsnet forum and saw the symptom of nephrotic syndrome. It sounded just like Olly. I demanded to be seen at hospital and within eight hours he had the correct diagnosis. 

“It is so rare that it is difficult for medics to notice. He has been on medication since the age of one year and nine months.” 

Chelsea must check his kidney function every day to make sure creatinine levels – toxic waste which builds up in kidney patients – does not become dangerously high. 

Getting back to normal life after lockdown is difficult

All of Olly’s appointments have been over the phone in lockdown but he is due an MRI scan on an unrelated cyst on his brain, so Chelsea knows she needs to go into hospital soon but admitted that makes her feel anxious. 

“Going outside into unknown territory when we don’t know if people around us are sick and could potentially make Olly very poorly feels very frightening,” she said. 

“I feel cautious so will do things slowly, at my own pace. Also, because my daughter Bailey is autistic it means change is hard for her, so I have that to consider on top of feeling anxious going outside again after lockdown. Too much will be unsettling for her, so for the sake of both children I shall need to take it slowly. 

“It is hard at times, but I just must smile through it. People don’t generally understand what it is like to have such a poorly child. I nearly lost him at one point but am grateful that I discovered the Mumsnet page to push for his diagnosis.” 

Chelsea walked in her garden for seven miles for the My Bridges Challenge organised by Kidney Research UK. Joining her remotely was her mum Kerry Bartlett and Aunty Gemma Bartlett who live in Bexley Heath.

Chelsea's mum and aunty
Chelsea's mum and aunty

The My Bridges Challenge replaced the annual Bridges Walks organised by Kidney Research UK which had to be cancelled due to COVID-19. It takes place in three cities of London, Newcastle and Glasgow and involves kidney patients, their families and friends getting together to walk seven miles across iconic bridges to raise money.  This year, supporters were set the challenge of arranging their own event with either the theme of seven and or bridges.

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