Mari

Mari is a loving, caring and affectionate child who charms everyone she meets.  She is really in tune with people’s feelings and can sense straight away if someone is upset or angry and her response straight away is to kiss, hug and ask them if they are ok.

Mari has Wagr syndrome which is a rare genetic condition that can affect both boys and girls. Babies born with WAGR syndrome often have eye problems, 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.  At 12 days old she was operated on for bowel malrotation.  When she was 1 she was diagnosed with Wilms tumour which meant she had a year of chemotherapy and surgery to remove 7 tumours.  When Mari was 2 she had cataract surgery on both eyes and further surgery to remove scar tissue.  She is registered blind, however, can see fairly well close up but is unable to see detail and cannot see more than a couple of yards in front of her.  She also has no depth perception. 

Despite Mari’s vision problems she is very determined and doesn't give up easily.  She is very much like any other child who enjoys painting, crafts, music and singing.  In her short life she has been through so much but she is tough and doesn't complain about anything.

“It is very rewarding having such a lovely little girl who has overcome so many hurdles and is coming on in leaps and bounds.   We are so proud of her and she constantly amazes us with her capabilities despite her difficulties.” Explained her mum, Caryl.

“We do have constant worry about her and the possibilities of the tumours returning, the long term effects of chemo, deteriorating vision and her coping with her limited vision and being able to do what other children do.  It is very much an emotional rollercoaster having a child with such a rare condition.  We have had to learn as we've gone on and to research as much as possible in order to help Mari and get the assistance she needs.  Knowledge is power and we've pretty much become experts on the condition and advising the consultants on what they should be aware of and checking on! It's a constant battle ensuring that she gets all the support she needs.  We feel very blessed to have Mari and wouldn't change her for the world, her condition has made her who she is.”

Mari’s parents are determined that Mari is treated like any other child who simply needs a bit more supervision to ensure her safety.  

To find out more about Mari's condition Wagr you can visit http://www.wagr.org/.  If you require information on Aniridia you can click here.

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