Sue and Helen

Sue Norris is taking on the Jurassic Coast Marathon Challenge, a 42KM walking event along the Dorset coast, this May. She is taking part and fundraising for PKD Charity in memory of her sister Helen.

Here, Susan tells us what prompted her to take on this challenge for PKD Charity: 

“I lost my dearest sister Helen to Covid 19 on 13th January 2021. She was everything to me, like a Mum, friend, confidante, as well as my precious sister and I miss her so much. Helen was 10 years older than me and she suffered from PKD. She was made aware that she had the condition after her 3rd pregnancy in 1993. She had suffered terrible pain with her PKD when it was first diagnosed, and on Jan 10th 2011, I donated one of my kidneys to her.   

The kidney started to reject after a few months, and to save it, she had a plasma exchange and basically, they took all her white cells out to stop her body from rejecting the kidney. Unfortunately, that September she caught shingles, then she caught a rare form of pneumonia I think it was, and because her immune system was now really impaired, she became terribly ill. She had to be put in a coma because her lungs, respiratory system and kidney all went into failure.

She was in a coma for weeks. We thought we were going to lose her so many times, but she was so strong and just kept fighting all the time. She lost her hair and had to learn to walk again as in the end she had to stay in hospital at that time for around 9 months. She was gravely ill, but you could never meet anyone more positive and braver than her. Time and again she caught viruses that saw her in ICU at the Royal London many times.

She loved her girls so much; Laura, Lindsey and Megan, they helped to keep her going. Then her Grandchildren, Charlie, Ivy and Alexander gave her even more reason to fight. She loved them with all her heart. At that time, I would go down to the Royal London hospital a couple of times a week.  

Helen’s husband Martin went to visit her every single day she was in hospital, and over the years that was so many times. He used to always try and make her favourite things to eat, because she lost her appetite so much and often felt sick. Throughout everything Helen remained positive, even when so ill, she would still say there are people worse off than her. The donated kidney only lasted 3 years and then she had to go on to acute dialysis. She had to have both her kidneys removed during a short interval when she was well enough to, due to the cysts causing infections. 

All of the staff on Floor 9 at the Royal London Hospital knew Helen well because it became almost a second home to her. They loved her and she was such an inspiration to the doctors, consultants, nurses and other patients. So much so that when The Queen came to open the new hospital, and they had to choose a patient to meet her - they chose Helen. She was so thrilled and happy that day. 

The kind of sisters we are - our sense of humour - was exemplified when we went to get all the tests to see if I was a match for a kidney for her. All we did was laugh. We joked about it all and it was so serious really. We didn't really listen to the negatives they told us; we were so certain it was all going to be fine. I would have done anything in this world for her, and she would have for me too. 

I've struggled with losing her, I just thought she would always be there and when she contracted Covid we still thought she would be ok, even when they put her on a ventilator, we all thought as always, she would fight it and pull through.

On that awful day last year, Martin received a phone call from the Dr, who said that he needed to go be with her. She passed away just before midnight. 

Martin gave me Helen's new walking boots (luckily, I'm the same size) that she never had a chance to wear. I've found some comfort in wearing them to climb Snowdon last year. Then I planned to climb Scafell this year in her memory but I'm having problems with one of my knees so I decided to do the Jurassic Coast Challenge instead. I know she would be proud of me, and it helps me knowing that. Getting out in the countryside and nature does help me to cope with losing this miraculous woman, she really was a walking, living miracle - her consultants thought that too. My darling Helen. 

I have chosen to do the Jurassic Coast Challenge as a real personal challenge for me. I had a knee replacement a couple years ago and I love challenging myself to do things. 'Can't' is not in my vocabulary (my big sis taught me to be that way) I have been training every day for about 3 or 4 weeks now, I do at least 5 miles a day, and I've now done 9 miles and then another walk of 11 miles. I'm really determined, and because it's for Helen I know I'll do it. I am taking part in the event with my friend Graham Hill, he has only just had a hip replacement, so we are like the titanium kids. 

I want the world to know about my one-in-a-million sister and I want her to be remembered forever. How un-selfish and how brave. She made everyone who knew her feel loved and important. So, here's to my beautiful sister Helen, the strongest and bravest person I have ever met.” 

You can support Sue and Graham’s fundraising by visiting their Justgiving page.  

Inspired by Sue's challenge?

We couldn’t provide the support that we do to anyone affected by polycystic kidney disease without wonderful fundraisers like Sue and Graham. If you've been inspired by their challenge and would like to take on your own fundraising challenge to support PKD Charity then please get in touch, we'd love to hear from you. Let us know by emailing