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UK Registered Charity 1104560

Here for families with youngsters who are blind have special needs, and life-limiting conditions since 2003

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My name is Tymandra and my husband is Craig – we are proud parents of Arwen Poppy who was born with cataracts in 2002.

She was called 'floppy' (or 'low toned' as we'd prefer) from birth and cannot sit, walk or talk (yet) but is making progress each day.

She has been tube fed since Summer 2004 as she was only gaining weight very slowly (ironic given her birth weight was 10lbs 6oz) and had her gastrostomy in December 2004. She is classified as having complex ‘special needs’ but to us she is perfect! She had a tentative diagnosis of 'Warburg Micro Syndrome', an extremely rare genetic condition (only 1 in ~230 million people in the world diagnosed so far), in January 2005 and this was confirmed in October 2010. If your family has someone special with this 'Syndrome' please get in touch via our ‘Warburg Micro Syndrome’ Facebook Page.

In special care a few days after my only daughter’s birth we felt like it was the end of the world - how could we manage with a child who did not have perfect vision? Now that seems such a minor ‘challenge’ and irrelevant to the mischievous bundle of fun she has become. Following trips to Great Ormond Street Hospital, Poppy was Registered Blind and with each new ‘challenge’ we are reminded how brave she is and how proud we are of our little girl.

I set-up POPSY to keep me positive and as an attempt to empower others who may feel out of control or are not sure what to do next and who feel alone.

We are here to help - you and your family!

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