The Legendary snakeSNAKEsnake will be taking part in this day long charity music event raising funds for Freddy’s Fight For Life which will also be featuring live music from September Son, Nick Parker, Sharon Lazibyrd, Liam Howard, Alex Hedley , Nature’s Cage, Andy Badman and Liam Goodman.
We will be on stage 5.30-6.15.
About Freddy’s Fight for Life
“Freddy is a cheeky 4 year old boy. However, he has a extremely rare
and life threatening heart condition. At 4 months old Freddy had an out of hospital cardiac arrest. His family were told that there was only a 6-8% chance that he would survive. If he did survive they were told he wouldn’t be the child they knew.
Freddy was diagnosed with a cardiac tumour- a Fibroma in his left ventricle. The tumour is 5 cm by 3.5cm. It makes up much of his heart wall and fills 2/3rds of his ventricle.
The tumour causes dangerous heart arrhythmias which make Freddys heart beat in excess of 200 beats per minute and can lead to sudden death by him going into cardiac arrest.
To date Freddys has had 3 heart surgeries and has a defibrillator implanted in his tummy.
There is no cardiac centre in the UK that have any experience in carrying out this surgery.
Cardiac tumours occur in only 0.2 percent of the population. They are completely random and is not a genetic condition. Most children present within the first year of life and unfortunately 33 percent do not survive.
Boston Children’s Hospital in the US is the leading centre in the world. From 1990 to date they have managed 27 cases. Since 2013 they have successfully removed 7 fibromas in children whose life threatening rhythms have disappeared once the tumour has been removed.
Freddys arrhythmia burden is controlled by medication. However due to serious side effects of the medication this is not a long term solution.
Freddy now needs to go to Boston to have life saving treatment to remove the tumour.”
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