A-T STORIES

Action for A-T uses the money it raises to fund vital research into the rare childhood condition Ataxia Telangiectaisa. Click on one of the links below to read the heartbreaking stories of the families who look to us for hope.

Our Story

Our wonderful daughter was recently diagnosed with A-T at just 21 months old. We didn’t think that anything was wrong before she was about 14 months. Then we noticed that her back and head seemed more unstable than normal. Initially, she started some physical exercise as we hoped that this type of training would help with the unsteadiness. […]

The Boys

The Boys’ Story

We have 4 exceptionally wonderful children. Our twin boys were diagnosed with A-T over 5 years ago. To say it came as a shock is an understatement. Apart from their balance not being quite right, they hit every developmental milestone in their early childhood so we were not expecting a serious diagnosis at all. I […]

Jenni’s Story

Jenni’s Story- Update April 2016 Very sadly, our darling daughter Jenni passed away on 7th January 2016. Like so many other children with A-T, she was diagnosed with cancer (Non-Hodgkinson’s Lymphoma of the Liver), in August 2015. She was fiercely determined to live, so I spent many weeks over the next 5 months in Alder […]

Lilly and Snowey

Lilly’s Story

Lilly was born by planned C section in May of 2009 and was a healthy normal baby. There were no complications during birth. From birth to two years old everything seemed perfectly normal, we had no reason to suspect hard times were upon the horizon. Lilly took her first steps at 10 and a half […]

Tilly

Tilla and Ines’ Story

Tilla (aged 7) is a funny, caring and beautiful Danish girl, with many friends who lives in a refurbished, old factory building in Copenhagen, Denmark with her little sister, mom and dad. She collects scraps, dries flowers and loves to dress up and play with her many girl friends. Tilla was almost 6 when we […]