Sally Parfitt
My Ride 100 for TSA page
Fundraising for Tuberous Sclerosis Association
Story
Hi All - Sincerely hope you don't mind me approaching you, especially as I know there are so many people these days raising money for so many different charities all hoping to get a donation...but...our wonderful son Elliot, is again getting on his Bike to cycle 100 miles for the Tuberous Sclerosis Association by taking part in the Ride 100 event! Here's his story...
Hi. I'm Elliot. On Sunday 4th August I am riding the Prudential RideLondon-Surrey 100 event in London again to raise essential funds for the Tuberous Sclerosis Association, the genetic condition that affects me, to thank them for being there for me, my family and the wider TSC family and by providing specialist clinics with fantastic doctors, including one at the RUH, Bath; for funding research into what can be an absolutely devastating condition and also providing advisors to give vital support to all those affected. And of course I aim to complete the 100 miles in the best time possible!
Twenty-six years ago, when I was 7 months old, the diagnosis of Tuberous Sclerosis Complex(TSC) came as a complete shock to my mum and dad. It was a genetic condition they had never heard of and as I had already had infantile spasms (which are severe fits) before the diagnosis no-one could tell them just how TSC would affect me and my development – it was a matter of wait and see.
Fortunately for me, the medication I was given straightaway at diagnosis stopped my fits and to date they haven’t returned. However due to TSC, amongst other things, I have mild learning difficulties, I am autistic, I have angiofibroma’s on my face and growths in my brain, kidneys (including particularly large ones in my kidneys called angiomyolipoma's) and a retinal astrocytoma in one of my eyes. Because of the wonderful research work undertaken because of TSA funding, I am currently taking a targeted therapy drug usually used to treat cancer which is slowly shrinking the large tumours in my kidneys. I'm due to have another Renal and Head MRI to check how the tumours in my kidneys are doing as well as the cortical tubers in my brain on 27 June so fingers crossed. TSC has affected my life in many ways but I try not to let it rule my life and it would be really awesome if you could donate to help me raise funds for the TSA.
The TSA are the only UK charity dedicated to supporting people affected by Tuberous Sclerosis Complex (TSC). TSC is a genetic condition that can lead to growths in various organs of the body, but those most commonly affected are the brain, eyes, heart, kidney, skin and lungs. These growths may also be referred to as tumours but they are not usually cancerous. When they cause problems it is mainly because of their size and where they are in the body. TSC growths have different names depending on which organ they are found in. The impact of TSC varies considerably, with some people being relatively mildly affected (they may not even know they have TSC) and others being more significantly affected which impacts on their quality of life and requiring 24 hour care. This impact may be evident in the early years, or not until adulthood.
Please support me and the TSA by donating whatever you can - any amount would be very much appreciated!
