On Sunday 30 September 2018, I am organising a 15-mile walk around Richmond Park to raise money for kidney research. I need as many people as possible to walk with me and help raise much needed funds.
This is why...
I was 15 months old when I was first diagnosed with FSGS Nephrotic Syndrome - a life threatening disease where the immune system attacks the kidneys, causing permanent damage.
One morning, my Mother went to get me from my cot and noticed my face was very puffy. At first she was told by the GP it was an allergic reaction to Karvol decongestant capsules. However, as the days went on, and my condition worsened, it became clear it was far more serious. I became so puffy, that even my nappies and clothes no longer fitted me.
I ended up being rushed in a blue light ambulance to Great Ormond Street where my parents were given my diagnosis. It was likely by the age of five I would be facing acute kidney failure and would need dialysis and a transplant.
I was treated with a mix of extremely strong drugs that only partially
worked. Over the next few years I relapsed several times and spent much time in and out of hospital. Then my paediatrician had a hunch and decided to try a chemotherapy drug called Vincristine, originating from the beautiful Madagascan Periwinkle flower. That was the turning point. Vincristine became my miracle drug and it sustained me in remission for many years at a time.
My consultant thought he had made a break through. Unfortunately, it did not produce consistent results for other patients and so it was not used as a standard drug to treat the disease.
It was and remains viewed as a very unorthodox treatment - sometimes met with great scepticism from other consultants. So when I relapsed again in May last year I became extremely anxious I would not be able to find a doctor, who would be prepared to treat me with my miracle drug.
This is why I was so lucky to find two of the most special, wonderful consultants at the Royal Free Hospital, Dr. Ruth Pepper and Dr. Aine Burns. They took a big risk and managed to convince the hospital into trying Vincristine yet again.Thankfully, Vincristine didn’t fail me and put me in remission once again.
will ever repay the hospital for the amazing care and support I received. Nevertheless,I want to try and give something back as a way of saying, thank you.
But the main reason why I am organising this walk is because there are so many patients with this disease who do not have a miracle drug. Many end up needing a transplant - except a transplant is not a cure as their immune system can attack their new kidneys. Sadly, this is a chronic disease and there is no cure.
So I am asking my family, friends and just about everyone to walk with me on Sunday 30 September and help me raise these much needed funds. There is also an option to do a much shorter route for those who do not want to walk 15 miles.
To find out more
and register your place, please email firstname.lastname@example.org.
Alternatively, you can sponsor me on this page.
Finally, I would be so grateful if you could share this page with anyone you think would be interested in taking part. My aim is to recruit an army of fundraisers, but to achieve this I need your help.
Thank you so much for all your support.