Kellie's page
Fundraising for We Are Beams
Fundraising for We Are Beams
My friend Lisa's daughter Ava was diagnosed with Angelman Syndrome at the beginning of this year. Angelman is a rare condition with a long list of symptoms including global developmental delay, lack of speech and epilepsy. Unfortunately there is currently no cure as there have only been approximately 360 cases ever diagnosed in the UK since the condition was discovered in 1969.
There are some positives though, one of the characteristics is a very happy and smiley disposition which means Ava has a wonderful sense of humour and loves to giggle - especially when at the pub as in the picture above! Ava is now 2 and due to the delay in her development has only started sitting up during the past few months - as you'll also see above, she's really good at it now! Ava may one day learn to walk, possibly around the age of 5 but is unlikely ever to speak more than around 5-10 words and will need a lifetime of care.
The Parents Consortium is a local registered charity which provides support and fun for the whole family which means her big sister Esme gets to join in too! Ava loves their excellent sensory room and garden, she loves music along with the colourful flashing lights and bubble lamps which the sensory room provides.
I will be participating in the Womens 5k Challenge for Ava in order to raise money for the Parents Consortium. As most of you know I have suffered a foot injury over the past few years and have been unable to run but I am planning to do my best for Ava even if I crawl it - especially as I hear she works so very hard at her various therapy sessions!
I am grateful and thankful for any support, however small, that you can give.
For more information on The Parents Consortium please see: http://www.parentsconsortium.co.uk/
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