Story
My story starts in Sept 2014 when I was diagnosed as diabetic, I made the decision to do something about it and changed my lifestyle, started running and became a much fitter & healthier person. In October 2015 I ran the Great North Run with Scott in aid of the Tuberous Sclerosis Association, a fantastic charity that provides research and support to this complex condition. In January 2016 I decided to take part in a 1000 mile challenge online. Never doing things by half I have added to this to create the 2 Million Steps in 2016. Here's a list of my challenges:
1,000 Running Miles
Colchester Half Marathon
Ipswich Half Marathon
London Marathon
Stour Valley Path 100 km Ultra Marathon
A 12 Hour Treadmill Challenge (kindly hosted by our local Tesco store)
Plus a few other fundraising events through 2016.............
Here is Kimberley's story...................
Scott and Nina's daughter Kimberley aged 6yrs has TS, here is her story...................
Kimberley suffers from Tuberous Sclerosis Complex (TSC), which she was diagnosed with shortly before her first birthday.
TSC is a rare complex genetic condition caused by an alteration in a gene.
People with TSC have benign tumours in different organs of the body (brain, heart, eyes, skin, kidneys, lungs) which can cause epilepsy, learning disabilities, autism spectrum disorder, kidney problems and much more
Kimberley has multiple tumours on her brain including one large tumour (which has to be closely monitored), tumours on both her kidneys, skin growths/pigmentation, learning difficulties and behavioural problems. She also suffers from prolonged seizures which, amongst other times, have on three occasions led to her to require long periods of time in intensive care at Great Ormond Street and Addenbrokes. Others are even more severely affected.
The TSA provides a 'lifeline' to those affected by TSC and their families. It offers support and advice, TSC Advisers, specialist TSC clinics and conducts research into this multi-system genetic condition.
The TSA have been invaluable for Scott and Nina recently. One of their advisers have attended Kimberley's primary school to educate the school's staff on Kimberley's condition and her support needs. The TSA have also provided valuable support in Scott and Nina's application to the local government in their application for an EHCP (Educational Health Care Plan).
Your donation would mean a great deal to me and the TSA. The following are examples of costs:
£68 will support 1 Hour of TSC Research
£98 will help TSA provide 1 Hour of Support Services
£507 will support 1 Day of TSC Research
£731 will help TSA provide 1 Day of Support Services
£2,535 will support TSC Research projects for 1 Week
www.tuberous-sclerosis.org