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Rare disease diagnosis came too late for Mum

02 January 2022

Lynda Balchin was a hard-working mum who always put others first. She was the glue that kept her family together and her life revolved around her three daughters Louise, Rebecca and Abbey.

For as long as they could remember, their mum had always been tired. Lynda had an exhausting cleaning job at a Surrey hotel close to their Brockham home, and she carried all of the burden of running a household – because Lynda wanted her girls to enjoy their childhood.

Lynda Balchin with three daughters
Pictured from left to right Lynda Balchin and her daughters Abbey Rebecca and Louise.

Kidney condition diagnosis

But in 2014, the tiredness became far more noticeable and unexplained sores began to appear on Lynda’s legs, which would not heal. Things didn’t improve, despite repeated visits to doctors, who put her symptoms down to general fatigue and an adverse reaction to an insect bite. At that point nobody realised that Lynda had atypical haemolytic uraemic syndrome (aHUS) – a destructive kidney condition that affects the immune system, causing it to attack the kidney cells. Blood clots form, which block the tiny filters in the kidney, leading to kidney failure.

“When Mum had to be rushed to East Surrey Hospital, we didn’t actually know why,” says Rebecca.

“All I remember was talking to her briefly beforehand as she lay resting on the sofa, asking how to work the washing machine, and suddenly realising that she wasn’t right. I was 20 years old at the time. Abbey was only 18, and Louise was almost 22.”

When Lynda arrived at the hospital, her daughters hoped that doctors would be able to quickly diagnose the problem, but it soon became apparent that Lynda needed specialist help and was transferred to University College Hospital in London

“The night before we were due to go to London to visit Mum, I sat up making her a ‘Get Well Soon’ card. At the time, I thought, ‘she’s in the best hands now, it’s only a matter of time before she’s going to be home.’ I didn’t for a second think that she would never be home again,” says Rebecca.

“Seeing Mum in hospital was the worst experience of my life. It finally hit me just how sick she was. All we could do was sit and watch her. She was barely responsive. I remember holding her hand and giving it a gentle squeeze and she gave the faintest one back. She knew we were in the room at least, that someone was there.”

“I remember we brought her pyjamas and books in case she needed them, thinking that we would be seeing her soon and she would be on the mend. I didn't realise how bad it was until she went on dialysis and had to be sedated because she was so unwell.” says Louise.

“I remember being so, so frustrated and angry at our local doctors, thinking ‘why didn't they do more or ask more questions after all the repeated appointments?’ We all felt guilty too, thinking ‘why didn’t we push her more to get checked properly?’ But aHUS is so rare and Mum didn't want to worry anyone or be a burden. Right up to the last minute she was still looking after us all, like she always did.

“The UCL doctors did everything they could to help and took the time to explain the illness and answer our questions. They gave us a booklet about the disease too – a small thing, but it helped me to understand, even if I was not really ready to accept it.”

The sisters were told that a genetic fault had been responsible for Lynda developing the disease, and that they may also carry the defective gene. Thankfully, tests for the genetic fault came back negative for all three.

“I remember feeling anxious about my future and my sisters’ futures, scared we could become very unwell also. It was all such a blur. I had no chance to really take it in before I had to think about how we were going to cope without Mum,” says Louise.

Despite initial signs of recovery, Lynda passed away on April 27, 2014 – less than three weeks after falling ill at home. She was 57.

“It’s hard to understand how someone who ran around all day doing everything, just deteriorated into someone who couldn’t even walk up the garden path without feeling like she’d just run a marathon,” says Abbey.

“There were so many symptoms and signs that were overlooked or missed, partly at the fault of Mum, who was just one of those people who didn’t think she had time to worry about herself. This illness just seemed to attack everything all at once and it was all too late when they eventually did diagnose her. Being something so rare, it never even crossed people’s minds.

“I was doing school exams at the time and had to put on a brave face throughout. But having someone so precious die of an illness you struggle to explain or even remember the name of left me pretty broken. Now I have two young children without the Grandma who would’ve loved them unconditionally and yet didn’t get the chance to.”

Remembering Lynda

All three sisters are determined to share Lynda’s story to keep her memory alive and to hopefully prevent other families from going through the same heartache as them. They have set up a Much Loved memorial tribute page to share photos and memories of Lynda and raise money for vital kidney research.

“By sharing Mum’s story, hopefully other families will be able to spot the warning signs of kidney disease much earlier and get the help they need sooner,” says Abbey.

“When Mum was finally diagnosed with aHUS, we were told that, at best, that recovery would mean a lifetime on dialysis, but so much more can be done now. They’ve even developed a treatment for the condition,” says Louise.

“We were all so young when Mum passed away. I wish she could see us now and I hope she would be proud of us,” says Rebecca.

“Mum was a wonderful person – a beautiful soul. She lived to help others, and by telling people about her and how special she was we can hopefully help others too.”

Find out more

To find out more about Lynda and make a donation to Kidney Research UK visit her tribute page: https://lyndabalchin.muchloved.com/

Find out more about aHUS, and how funding from Kidney Research UK helped scientists to develop a new treatment for the condition, using a drug called eculizumab.

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