Weʼre raising £2,800 to raise money for little Mari so she can have an Optilec traveller HD, by swimming the English Channel solo on 19 July 2019
- Cardiff, UK
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My second attempt to swim the English Channel solo on 19 July 2019 is to raise money for beautiful Mari. Mari has WAGR syndrome which is a rare genetic condition that can affect both boys and girls. There are only about 300 worldwide cases and Mari is the only person in Wales with the condition. Babies born with WAGR syndrome have the eye condition Aniridia, and are at high risk for developing certain types of cancer, and possible learning delays.
From the very beginning life has been difficult for Mari and in total she has had 11 surgeries. At 12 days old she was rushed to hospital and operated on for bowel malrotation. Then her parents received the news they’d been dreading a few days before her first birthday. She was diagnosed with Wilms tumour, her treatment entailed a year of chemotherapy and surgery to remove 7 tumours from her kidneys. Mari has also had eye surgery. She is registered blind, she can see large print very close up but she is unable to see detail and cannot see more than a couple of yards in front of her. She also has no depth perception.
Mari is a loving, caring and affectionate child who charms everyone she meets. Despite Mari’s poor vision she is very determined and doesn’t give up easily. She is very much like any other child who enjoys swimming, crafts, dancing and riding her sccoter! Mari’s parents are determined that she is treated like any other child who simply needs a bit more supervision to ensure her safety. In her short life she has been through so much but she is such a happy little girl, she is really tough and doesn’t complain about anything.
Mari attends Llandwrog Primary School and loves it there. She has additional support at school and is learning braille. She requires learning aids and equipment to support her with her learning. An Optilec traveller HD will enable Mari to enlarge books and learning materials to a size which she can read, however these cost over £2,800 to buy, please help by sponsoring.
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Aug 10, 2018
Good luck x
Aug 9, 2018
Best of luck Nicola! Makes me sea sick thinking about it🤪
Aug 3, 2018
Thank you nicola all the best for the swim Rhys and Lena . X X
Aug 2, 2018
Pob lwc Nicola! Mari is a lovely little girl and anything that will make her life a little bit easier is a fantastic cause. Wishing you all the best with your training! Elliw a’r teulu x
Jul 31, 2018
Well done! Massive respect. Cariad mawr, Gwydion, Alaw, Macsen a Ianto xx
Jul 30, 2018
Pob lwc x
Jul 29, 2018
Pob lwc Nicola, from Mari’s next door neighbours! Angharad, Ifan, Maelan a Nyfain xx
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About the fundraiser
I'm raising £2,800 to raise money for little Mari so she can have an Optilec traveller HD, by swimming the English Channel solo on 19 July 2019.
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