When I was 2 and 1/2, my little sister was born.

She was like a little doll with big blue eyes and blonde hair and she laughed constantly. She still does actually!

As soon as she was born, it was clear that she was to face some huge challenges in her life.

Jo was born with a type of Spina Bifida. At the base of her spine was a huge lump filled with fluid from her spinal cord. The bones were also not formed properly. 

During her first week of life, while the doctors were testing her, it was discovered that she also had something called a Wilm's Tumor on her kidney. The tumor and the kidney were removed when she was just 8 days old and the remaining kidney was preserved but with complications from reflux which resulted in chronic kidney disease and lifetime of painful kidney infections.

She came home from hospital and developed normally, hitting all her milestones and, despite lots of outpatients appointments and extra special care, lived a pretty regular life.

When she was 4, she had to go into hospital as it was time for her to have her lump removed from her back.

Jo (left) Me (right)

The operation was successful but I am not sure of the exact procedure (I was only 6) but I know that she had a bone graft and had to lay in bed for a long time. I remember visiting her at the hospital and watching the wonderful nurses caring for her and comforting her as she cried while they gently turned her in bed.

Her medication was cunningly concealed in strawberry jam and, to this day, she cannot eat the stuff!

Upon her return from hospital, we both decided to celebrate by riding suitcases down the stairs. I'd also make up little stories at night time when she was scared. Yes, I know, very sweet! It also may have had something to do with me feeling rather guilty about telling her that there was a black panther under her bed.

Jo (left) Me (right)

Jo went to mainstream school and was bright, popular and clever. To look at her then and now, you'd never know that she has pretty much suffered pain and discomfort for every day of her life.

4 years ago, Jo had to have surgery on her feet. She had a condition called Claw Feet which arose from the Spina Bifida. Her feet were both basically taken apart and put back together again with pins. Hideous but she just got on with it as she does.

She was a hilarious child and loved nothing more than playing with her pet woodlice. They all had names and she would tenderly pick them up and 'make them walk and dance' while doing their voices.

If anyone ever wanted to make her mad, it was simple: Jo owned a pair of blue and white striped dungarees with a patch on the bib pocket which, in bright red letters, said "BIG BOSS". If anyone dared to declare that they were, in fact, the boss, that little girl would go nuts and yell at the top of her voice "NO! I'M THE BOSS! I'M THE BOSS!" 

Jo (left) Me (right)

As a teenager, she did all of the usual things like stealing all my clothes, make up and whatever else she could lay her hands on. That reminds me...

I'm backtracking to when she was about 12 and had decided to go into my room and take out Boris, my hamster. She dropped him and managed to catch him in her hand. Unfortunately, she must've grabbed him too hard as the poor thing's eyes bulged right out of his head. She later told me that she sat on my bed crying and trying desperately to push his eyes back in with her palm for a good few hours.

I could go on but I'm probably going to be in enough trouble with Big Boss as it is.

Me (left) Big Boss (right)

Jo has 2 sons, Bailey and Harrison. They are 10 and 8 years old and are the most wonderful little boys. Jo adores them as do I and everyone else who meets them. They are both like her in different ways.

Everything has really been pretty normal in Jo's life until about a month ago.

After feeling really grotty (more than usual), Jo ended up in hospital where it was discovered that her kidney was failing and was functioning at less than 8%. Dialysis was started and, as an arm fistula takes from 4-6 weeks to heal, she had to have a tube put into her neck as there was no time to wait, She's having 4 hours of dialysis every other day and has had a fistula placed in her arm now. The doctors think that it might not have taken properly so there's a chance that she will have to have it redone this week. This means that the neck fistula will have to be used for a bit longer. It's pretty gross but she's coping really well. She copes with everything.

The worst part about it for her is the sheer exhaustion which, along with the hours spent in dialysis, is robbing her boys of time with their mother. It's heartbreaking and they are scared and worried and missing their mum.

I really think that she doesn't realise how strong she is. She says it's because she's never known any different but she's brave, have no doubt about that.

Jo needs a kidney transplant and she needs one as soon as possible. I've always thought that I would be able to donate one of mine. In my mind, I was always just carrying a spare for her.

Jo the Mouse

Jo being 'shy'!

We met with Kay Hamilton, the transplant co-ordinator at Southmead Hospital on Tuesday 24 July. She was lovely, honest and very, very kind. A quick glimpse through my medial records made her doubtful about my eligibility and a meeting between various specialists and kidney surgeons was scheduled for the next day. I got a call in the afternoon from Kay as soon as she'd left the meeting with the devastating news that, because of my own health problems, I was not allowed to donate a kidney to my sister after all.

It's not something you can argue with or fight. If there is any risk to the health of a donor, no matter how small, that's it. The health and well being of a donor is more of a concern than the recipient.

Jo's partner, Ben, immediately asked to be tested so he's given his blood. It takes 4 weeks to see how well the tissue matches. It's unlikely that he'll be a match but it's worth a try.

A living donor would be the best source of a kidney for Jo. This is because there is more time to test and find out, in depth, the medical history about a person. It's more rushed with a deceased donor and, obviously, they can't answer many important questions. Transplant from living donors also last longer than those from deceased donors.

This blog is an appeal to anyone out there who may want to do something life saving for another person to get tested as a living kidney donor. Even if you don't match Jo, you will match someone else just like her who desperately needs a new kidney in order to live a normal life. As you will know from above, your health is taken very seriously in order to minimise any potential risks and there are millions of people living long and healthy lives with one kidney.

My beautiful sister

We have learned so much already on this journey. The impact on the life of a renal patient, their family and friends is huge. Even Jo's diet is restricted. She's too young, vibrant and needed for this and the life of Jo, her children, partner, friends and family will remain as it is until she receives her new kidney.

If you are blood type A or O and would like to be tested as a living kidney donor for Joanne Shipley, please email your name, date of birth, address and blood type to  bigsisjude@gmail.com I will then send a list of potential donors to the transplant team once a week. Your information will not be used for any other purpose whatsoever. The team will  log your details and get in touch with you to arrange testing. It may take a few weeks as they are extremely busy doing wonderful work for renal patients just like Jo.

Please read about important information here before emailing

We are on Facebook at Jo's Kidney Quest Facebook page and you can also follow Jude and Jo on Twitter. When tweeting, please use hashtag #joskidneyquest

***UPDATE***

08/08/12 - I've had to remove the telephone number and email address from the renal unit as they have been inundated with calls and emails. Amazing, but it's taken over everything else they need to do today!

Thank you for your wonderful support!

Whilst researching for information to give people about living kidney donation, I came across one woman's real life story which describes each step of the procedure in detail from her own point of view. Read about Diane Franks and the story of her amazing gift of life to someone.