Tilla and Ines’ Story

tilly-01Tilla (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 got her diagnosed with A-T. It had been a long, hard way to finally get the blood test done and when we got the result we had already read about the disease on the internet. We knew what A-T was, and we were devastated. In Denmark there is not much focus on A-T, no organisations, no research and no one who knows how many has the disease and where to get in touch with them. We felt very alone.

Tilla on the other hand does not feel alone. She attends a normal school and has already got new friends, although we were worried when she left her safe kindergarten last summer. But the new teachers and school friends have all been welcoming Tilla, and us, very warmly. We have been quite open about the disease and shared it not only with family and friends but also with teachers and parents of the class.


Ines (aged 9 months) is the cutest little creature with cheeks as big as a hamster and eyes as sparkling as stars. She loves to play in her sister’s play kitchen and has already four teeth and two more on the way. She crawls and stands and loves to try to walk. Our expectations of her life are certainly not like any other carefree parents, but we love her deeply, maybe even more, as we know the limits of her life. With Ines we will not have to go through all the worries about what’s wrong and why. We have known her condition from the very beginning and therefore we can concentrate on enjoying her fully. While we hope for research to make crucial breakthroughs that can help her get a better life.


Ines was still in her mother’s womb when we realised that there was a 25 percent risk that she had A-T, as a result of Tilla’s diagnosis. Through the rest of the pregnancy and until we felt ready to get our little baby’s blood tested, we hoped and hoped. She was 4 months when the doctor told us that also our second daughter without any doubt had A-T.

Even though our situation might seem unbearable, we find strength everyday just by looking at our happy and loving girls. They shall have the most beautiful lives we can give them.