UK Registered Charity 1104560

Helping families to challenge developmental milestones and live life to the full

More about us

We set-up POPSY because there are so many services in place for our child but nothing for us as parents.

We felt other parents would surely benefit from support from others who knew how they were feeling.

My name is Tymandra and my husband is Craig - we’re proud parents of Arwen Poppy who was born with cataracts in 2002. After lensectomies at three weeks old she now wears contact lenses.

She was called 'floppy' (or 'low toned' as we'd prefer) from birth, cannot sit (yet) but is rolling and 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 I still refuse to admit to myself that this is the case. She had a diagnosis of 'Warburg Micro Syndrome' in January 2005, a rare genetic condition which only 24 other children in the world have - that we know of. If your family has someone special with this 'syndrome' please get in touch!

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 go on now we had a child who didn’t have perfect vision? Now that seems such a minor ‘problem’ and irrelevant. Following trips to Great Ormond Street Hospital, Poppy has now been Registered Blind - we are so very proud of our brave little girl.

This website describes our Support Group - set-up to keep me positive and as an attempt to empower others who may feel out of control and devoid of hope.

We’re here for you - to help you help you and your family!