Weʼre raising £500 to help raise funds for my 10 year old niece Lola for dolphin and intensive physio-therapies.
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I am taking on the Tatton Park Half Marathon on 20th November to raise funds for my niece Lola.
Lola was born with a rare chromosome disorder, 9q34.3 deletion syndrome or as it is now called Kleefstra syndrome, more information is available at http://kleefstrasyndrome.org
When Lola was diagnosed at 13 months she was only the 20th in the world, now there are known to be around only 350 cases.
This affects her in many ways, she was born with a heart defect and has severe stomach issues both of which have resulted in numerous major surgeries. Lola has physical and mental disabilities affecting all aspects of her life; she cannot walk, talk, feed, understand the world around her or communicate.
Despite all that she has been through Lola is a very beautiful, happy, loving little girl. She is soft and gentle and enjoys life, her few favourite things sunshine, water play, music and cuddles !
Her smile is infectious and her little giggles never fail to put a smile on faces of friends and family..
This is to help Lola get to dolphin therapy at a specialist institute, and my way of giving Lola something she will enjoy so much, benefit from and hopefully help improve her development both mobility, learning and overall quality of life.
To see a short video of Lola growing up please copy this link or go to youtube and search for "Lola" and "Kleefstra" https://youtu.be/aEnuERlJDzQ
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Nov 23, 2016
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