Lisa and I are running 100 miles minimum between us during March

Kidney disease is known as the silent killer,  because most people don't even realise they have it until the end stages. 

I found out 6 years ago my, then,  3 year old son has chronic kidney disease . He went from being a normal healthy kid to living in hospital in a very short time with tubes sticking out of his tiny body and even though doing better now, he will never be cured, even with a transplant he will always have kidney disease and always need treatment, possibly requiring several transplants over his lifetime.  Back then it felt like the end of the world,  myself and my husband spent nearly 2 years taking turns to live in hospital nearly 200 miles away with Brody and switching to look after our other 3 boys whilst trying to hold down jobs and run the house. Luckily he got a mitrofanoff procedure just before he turned 5 (a way to empty the bladder using catheters through a stoma created next to the belly button) which has completely changed his and our lives so he can now live at home and experience a relatively normal life, however his chronic kidney disease is always there,  lurking, like a ticking bomb waiting to go off. The condition he has means the bladder is huge and engorged,  his takes up his entire abdomen forcing all his organs to be squashed up in his chest,  and because it is so big and muscular it cannot empty fully, so urine refluxes back into the kidneys causing scarring and irreversible damage. 

 Fast forward to Dec 2019 and he was not doing well and talk turned to dialysis last year but due to covid and a drastic change in meds the doctors managed to hold it off to try to keep him safe temporarily,  but we know the path he will have to follow and the difficulties he will always face because of his kidney disease.  

Unfortunately it doesn't end there, within 2 years of Brody being diagnosed,  his big brother was also diagnosed but with a much milder case.  He may lose a kidney due to a large growth in one that may need removing but they think he will manage with just the one.  Then in 2019 another member of my family was diagnosed,  it had gone unnoticed through their lives but was there waiting.  The specialists have said it is a genetic condition they all have,  that normally only presents in females but had mutated and only affects the male line running through the family - it has meant every man and boy has had to be tested and had to await the news of whether  their lives would be turned upside down, we luckily found out my eldest does not have it but are still waiting to hear about the youngest. 

 The problem is chronic kidney disease doesn't have many symptoms until its already established towards the later stages so you can have it and not know until its too late to make lifestyle changes.  Kidney disease does not just affect those with inherited conditions it can happen to anyone at anytime, which is why is so important to ensure research continues. 

After spending the last year in a total panic that I may lose half my family if any of us get covid,  I decided to take control and do something active so with the help of one of my closest friends we will be running through March which is Kidney Research month. Lisa herself only started running very recently but has persevered to run by my side so I don't give up through the ice,  wind,  rain and up the hills ( I like treadmills,  they only have hills if you want them to - Cornish roads not so much) and I have not run for the last year after suffering an injury last February so getting out for a run has been wonderful,  if challenging.  We will aim to run between us, a minimum of 100 miles (minimum of 50 miles each) during March with any money raised going to Kidney Research. (I say minimum as if we can run more we will but with kids home and both the main care givers of our families we are limited on times we can run). If anyone would like to sponsor us any amount at all we would both really appreciate it and the money will go to provide funding for research and treatment for kidney disease and conditions

Carey + Lisa x

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