Valley View Community Primary School

Vallew View Community Primary School

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International Batten Disease Awareness Day

Some families may know, but lots of you may not, that on the 9th June it was International Batten Disease  Awareness Day.  This is a very special day, especially for people affected by Batten Disease.

Connie Annakin, who is currently in Valley View nursery, has Batten Disease, and is bravely dealing with lots of hospital tests and treatments for the illness even though she is only four years old. It is a very rare condition and there are less than 150 children in the whole of the UK with the illness.

You can see some photos of Connie and her parents when they were at Leeds Town Hall last week. To celebrate International Batten Disease Awareness Day, Connie’s family managed to persuade Leeds City Council to light up the Town Hall with orange lights. There are some images here, of how special and different the Town Hall looked when it was orange for a short while.

Next year we are hoping to do some fundraising at school around the time of Batten Disease Awareness day, but we hope that this year, many of our families might like to learn a little more about the illness and its potentially devastating impact.

Connie is a delightful member of our nursery and her smile ignites a room. We are very pleased that Connie will be staying in our nursery next year, and we look forward to seeing her back at Valley View when the world is a little bit safer for her.

Here is a link to some more information about Batten Disease.

http://www.bdfa-uk.org.uk/what-is-batten-disease/