Thanks for taking the time to visit my JustGiving page.

I am competing in the Swindon Half Marathon and the fact that I even thought of completing this is a feat in itself - anyone who knows me know I am a COMPLETE Exercise Phobe and will make ANY excuse to get out of it! To add to my woe, I have just had knee surgery leavig me with 7 weeks to train to run 14 miles....

So why am I doing this and begging you for money- I am raising money for the CATS (Cure and Action for Tay Sachs) foundation and Ty Hafan following the devestating and heart breaking  diagnosis of Archie Watson who will tragically succumb to this disease.

Tay-Sachs disease is a rare and fatal genetic disorder that causes progressive damage to the nervous system whch causes a relentless deterioration of mental and physical abilities that commence around six months of age and usually results in death by the age of four. This means Archie is missing an enzyme called Hex A that breaks down fat in his nerve cells in his brain. This disease will take his sight, hearing, cause him to have seizures and lose all muscle control, including the ability to swallow or smile. He will eventually lose my life to this horrible disease between 2 and 5 yrs of age.

By the time a child with Tay-Sachs disease is three or four-years old, the nervous system is so badly affected that life itself cannot be supported. Even with the best of care, all children with classic Tay-Sachs disease die early in childhood, usually by the age of 4.As there is currently no cure for Tay-Sachs disease, the aim of treatment is to make a child living with the condition as comfortable as possible.

It is likely that the baby will be much slower in reaching developmental milestones, such as gripping objects and learning to crawl. Additional symptoms usually develop after about eight months of age and quickly become more severe. They include:

• increasing muscle weakness that progresses to paralysis (inability to move body parts)
• increasing loss of hearing leadign to deafness
• difficulties swallowing
• muscle stiffness (spasticity)
• lack of interest in the world around them
• repeated fits

 

The main aims of treatment are to:

• prevent problems with the lungs and airways
• help the child's swallowing problems 
• use medication to control, or at least partially relieve, symptoms such as fits and muscle stiffness

Donations will go to buy sensory equiptment for children like Archie and help provide care, comfort and support to children and their familes. This includes the management of physical symptoms and the provision of emotional, social, spiritual and practical support for the whole family, with the main aim of improving quality of life.

So donate anything you can - be it £1 or £20 every little helps and make sure you tick Gift Aid ( the government will actually give money back, makes a change!!!).

Follow Archie's story - https://www.facebook.com/#!/pages/Archie-Watson/149376711841213

Thanks

Fay xx

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So please dig deep and donate now.