Kimberlee Oosthuizen, 16, who lives in Gilibrand North, Chorley, is now on dialysis three times a week and faces another kidney transplant in a few years.
Kim and her mum Nikki want to share their story to highlight awareness of kidney disease and the importance of organ donation.
Kim, who is a pupil at Southlands High School in Chorley, was healthy and well and had no issues with her kidneys until the age of 12.
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Mum Nikki, 50, who also has daughters Kayleigh, 26 and Jodie, 21, said: “One day, Kim came downstairs and could not get her shoes on because her ankles were so swollen.
“We went to the GP and Kim had tests and within 24 hours, we discovered she had kidney disease. It was very frightening.”
Doctors initially thought Kim had nephritic syndrome, which is kidney disease involving inflamation and began treating her for that. However, when she did not respond to steroids, she was transferred to Royal Manchester Children’s Hospital.
Kim had a kidney biopsy which revealed she had FSGS with nephritic syndrome (Focal Segmental Glomerulosclerosis), a rare disease that attacks the kidney’s filtering units causing serious scarring which leads to permanent kidney damage and even failure.
Andy Cole, former Manchester United striker has the same disease and had a transplant this year. While New Zeland rugby union champion Jonah Lomu, who died in 2015, had the disease and was awaiting his second transplant.
Kim went on dialysis in June 2015 and her mum and dad were tested as potential donors to give her a kidney.
Nikki, who is a call centre consultant, said: “When it is your child, doubts do not even cross your mind and I desperately wanted to give Kim my kidney.
“My only worry was not being able to donate as you have to undergo so many tests.”
Kim’s mum and dad were both matches for her but Nikki was a closer match.
In May 2016, the operation took place for Nikki to give her daughter one of her kidneys.
Nikki said: “The transplant was a success but sadly the disease came back just four days later and it has now wiped out Kim’s kidney function again.
“I felt very sad that the disease had returned.”
Kim is on haemodialysis and travels to Manchester three times a week to spend four hours a time on a dialysis machine.
Nikki said: “On top of this, Kim has around six hours a week on travelling so about 18 hours a week are spent having treatment.
“Children on dialysis also suffer from nausea, cramps, headaches, chronic fatigue and high blood pressure during treatment.
“They are on special diets and fluid restrictions and the four hours on the machine are not always easy.
“But to look at Kim, you would never guess what is wrong with her. But without dialysis, she would not be here.”
Nikki has praised Kim for the brave way she has handled her illness and she has more than 80 per cent attendance at school despite everything she is going through and is doing her GCSEs.
Nikki said: “Kim is so brave and never complains.
“Doctors say Kim will need another transplant, but they have found that if you leave it four or five years, the second transplant tends to be more successful.
“Kim faces being on dialysis for at least another four years and then will hopefully have another transplant at around the age of 20.”
Kim said: “My disease affects me in many aspects of my life. The worst is the way in which I get tired very easily and out of breath, especially when playing sport.
“I have to miss three lessons of school a week and miss out on things like extra revision sessions or clubs all due to dialysis.
“If I want to go out, I have to try and re-arrange my dialysis.
“I want to do paediatric nursing when I am older because I like to work with younger children and want to help them.”
This year, Kim attended the British Transplant Games and performed, well winning several medals. She is now raising money for the next transplant games in 2018 for the charity Kidneys For Life.
Nikki said: “We want to highlight awareness of kidney disease and organ donation.
“There is a shortage of organs in this country and many people don’t think about donation until they are in this position.
“Kim is amazing and just gets on with everything. She is an inspiration.”
• Visit Kim’s blog at: Kimberleefsgs.blogspot.co.uk To sponsor her, visit: https://uk.virginmoneygiving.com/fundraiser-portal/someoneSpecialPage?pageId=831175
Be a donor
Last year, the Lancashire Post launched our Giving the Gift of Life campaign, urging more people to consider becoming organ donors.
In the past five years, 55 people from Lancashire have died while waiting for an organ transplant.
Many more endure gruelling rounds of treatment such as dialysis while they wait for an organ.
To become an organ donor, visit www.organdonation,nhs.uk and register as an organ and tissue donor.
It is also important to have a conversation with your family, letting them know your views on organ donation, so that when the time comes they are prepared and know what you want.
You also register to become a bone marrow donor at www.anthonynolan.org, and potentially save the life of aperson with cancer.