Thanks for taking the time to visit my JustGiving page.
My son Dylon was diagnosed with a kidney disease known as Nephrotic Syndrome when he was 5; he is now 9 and has had many relapses ever since (4x already this year). As our children look so well outside when in remission, it is difficult for people to see how unwell they are on the inside. My aim is to raise awareness of Nephrotic Syndrome and FSGS. Approx 2 in 100000 children are diagnosed per year, due to the condition being so rare funding for research is sparse. Many children are kept in remission by taking lots of medication daily that have their own horrific side effects; these are suffered as they outweigh the risk of the relapse. Some children never get into remission. A kidney transplant will not cure this disease; it is a syndrome that causes the kidneys to become damaged therefore, the chances of the new kidney being affected is high. There is currently no known cause or cure. We will never find a cure if we have no funding. I am asking for your support, not only financially by donating to research, but to help spread the word to raise awareness.
Just a quick update: The marathon was completed by my friends and I in 2 hours and 30 mins. There was lots of support on the day and I would like to thank all who donated and/or gave up their time for this worthy cause. I will be participating again next year (7th Oct 2012) and welcome all who wish to join me or get involved in any way you choose. All the best, Ben
