Light showers


12°C | 8°C



14°C | 6°C

Broken cloud


17°C | 7°C

Home   Deal   News   Article

Youngster Lilly Day from Deal only 20th person in world to have rare genetic mutation Ataxia-Telangiectasia

17 December 2013
by Emily Stott
A four year old girl from Deal is only the 20th person in the world to have a rare genetic mutation that will end her life prematurely.
Lilly Day, of Lydia Road, has an uncommon variation of an already rare disease Ataxia-Telangiectasia, called MRE11.
This is a degenerative condition that causes increasingly severe disability. With classic A-T, most patients are wheelchair-bound by the age of 10 and die in their late teens.
Hayden with dad Joe and Lilly

Hayden with dad Joe and Lilly

Lilly, who goes to Hornbeam Primary School, has a form of A-T that is slower progressing and as she is only the ninth person in the UK to be diagnosed with a condition very little is known about.
Her father Joe Day, 37, said: "It's going to affect her everyday life dramatically. With a typical A-T patient, sadly the walking will peak at the age of four and a half which is where she is now.
"It's a deterioration from this point she will eventually lose the ability to walk, she will learn to read and write and then lose the ability to do that, and eventually lose the ability to swallow."
Mr Day's son and Lilly's half-brother - 15-year-old Hayden Day - will be taking part in the Boxing Day dip with other pupils from Castle Community College to raise money for the A-T Society, the charity that has been working closely with the family.
To sponsor Hayden and raise money for the A-T Society, visit full story, read Thursday's East Kent Mercury.

Click here for more news from Deal.

Click here for more news from around the county.

Sorry, comments are not enabled for this article.

Login or register to post commentsPost Comment

Forgotten Password?

Forgotten Username?

Don't have an account? Please Register first!

The KM Group does not moderate comments.
Please click here for our house rules.

Thank you. Your comment has been received and will appear on the site shortly.


Terms of Comments
We do not actively moderate, monitor or edit contributions to the reader comments but we may intervene and take such action as we think necessary, please click here for our house rules.. If you have any concerns over the contents on our site, please either register those concerns using the report abuse button, contact us here, email or call 01634 227989.