The story of Olivia
Hi, this is Olivia from Germany, 16 months old – diagnosed with infantile Tay Sachs disease in 12/2021.
There were months of not knowing whats wrong with our so truly perfect baby who entered our world in 09/2020 – healthy (at least we thought so), beutiful and with lots of energy. In the first 7 to 8 months she developed completely normal, but then she stopped and now (starting with 11 months) there has been regression. We ran from doctors to therapists, MRI, EEG,.. they didn‘t find anything. They told us to be very sorry but they really don‘t know what is wrong with our daugther. Until they found a cherry red spot on the backside of her eyes. So that after one more blood test they diagnosed infantile Tay-Sachs. Which means that Olivia will loose everything she has ever learned. On top there will be seizures, she will loose the abilty to swallow, to breathe on her on, she will be paralyzed and in the end she will die by the age of 3.
At the moment she is still doing quite well – she smiles, she loves music and is happy in her own little world. I think it is the worst thing that can happen to a person – knowing that you child will die and you cannot do anything against it. you only can hold her – love her – enjoy every single moment! And this is what we are doing know. We dont want to cry for a person that is still here. We wanna be happy for having her in our live and make the most out of it. I loved her from her first heartbeat on the ultrasound- but since I know that she is ill our love for her increased to a level i never thought would be possible.
We will fight for her until the end and we are so proud that she is our daughter.