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E.Port Rat’s Run 4 Kole
0% complete
£10,332 raised of £10K
201 donations
The Fun Part…
12 cars. Nearly 50 lads. 1,446 miles. 6 days. One incredible cause.
This year, 12 cars will be taking part in Alfie Duncan’s Rats Run, travelling all the way from Ellesmere Port to Benidorm to help raise money for Kole’s crucial treatment in America.
The challenge is simple: buy a car for no more than £600 and try to make it across 1,446 miles over 6 days. Along the way there will be plenty of stops, surprises, and unforgettable moments.
With nearly 50 people joining the adventure, the big question is: will all 12 cars make it to Benidorm?
There’s only one way to find out — follow the journey to Benny and support an amazing cause every mile of the way!
Kole's Story…
On the 28th April after spending practically all of his short life in and out of hospital, hours upon hours at specialist appointments. Our beautiful Kole was diagnosed with Sanfilippo Syndrome (MPSlllA) more commonly known as Childhood Dementia. Affecting around only 140 children in the UK, Kole is believed to be the youngest nationwide battling the disease. Sanfilippo Syndrome is referred to as Childhood Dementia due to the nature of the disease. The disease attacks the central nervous system, which includes the brain and spinal cord. Slowly stealing children of skills they have gained. Without treatment Kole will lose all of his abilities leading to premature death by his mid teens.
HOWEVER, the FDA over in America have until the 19th September this year to approve a Gene Therapy treatment (UX111) clinically proven to improve Kole’s quality of life and time with us. Children that have received the treatment in trials are still walking, reading & playing amongst friends in sports teams in the mid teens age bracket. It really is life changing! After speaking to Manchester’s Willink metabolic unit (Kole’s specialists) we’ve been told other similar Gene therapies have been priced in excess of 2million pounds. We haven’t got time to wait and see if the NHS (NICE) approve this treatment in years to come because any lost skills can’t be gained back. In order to keep Kole’s quality of life, the Gene therapy is needed before any brain damage has taken place. Due to Kole’s age this puts us in a huge advantage for around 1 year. The gene therapy essentially replaces Kole’s faulty gene with a working gene through a port in the brain.
Thank you for taking the time to read our story. Your support, means more than words can express. Together, you are helping us give our son the love, care, and precious memories he deserves.
