Addison F's quilt    (Quilt Completed)

Thank you

Coming soon...

Finished photos

Individual squares

Card

Stitched by: Kaz Bowen

Biography

Addison was born a perfectly healthy little girl. Around 6 weeks we noticed feeding difficulties and seizure-like episodes. We spent weeks in hospital trying to find what was causing these issues. Unfortunately the doctors did not have any answers.

At about 8 months old we were moved to another hospital where the neurologist made a diagnosis of a ‘movement disorder’ but wasn’t sure which type. We spent two weeks in hospital while he experimented with a variety of drugs and therapies. The Dr was convinced something would show up on Addison’s lumbar puncture but like all previous tests it showed nothing.

Our Dr referred us to Great Ormond Street in London to be seen by the movement disorder specialist. This felt like such a long wait! Finally we got an appointment and travelled to London. Once there the specialist had an idea of what it could be. She performed more tests and we waited 6 months for the diagnosis. Addison is 1 of 50 in the world, so it is super rare. Only 3 cases in the UK. The doctors don’t know much about this disease but we are in the process of trialing new drugs. So we are staying hopeful her quality of life can improve!