At the age of only 20 months old, my cute little nephew Fabian needs 24/7 care. He was just a normal little boy, crawling,walking and playing with his older brother Christian, who he dearly loves. Then very sudden one day last year in November his head started falling to one side...like he didn't have the strengh to keep it upright. And within the following 6 weeks he stopped crawling and walking, and could't sit upright in a chair without supporting cushions around him.

After endless trips to the doctor, local hospital and trips to a special clinic (which is a 3 hour drive from their home), we finally got the diagnosis on the 14th of February this year. Aicardi-Goutières-Syndrome (AGS)

AGS is an inherited encephalopathy that affects newborn infants and usually results in severe mental and physical handicap.

There are two forms of the syndrome; an early -onset form that is severe, and a late -onset form that has less impact upon neurological function. Babies with later-onset AGS begin having symptoms after the first weeks or months of normal development, which appear as a progressive decline in head growth, weak or stiffened muscles (spasticity), and cognitive and developmental delays that range from moderate to severe. Symptoms last for several months, and include irritability, inconsolable crying, intermittent fever, seizures, and loss of developmental skills.

There have been clinicial trials worldwide on AGS, but unfortunately there is NO cure for it. Because AGS is so rare, there are just 70 cases worldwide and only 7 in Germany.

Fabian has another appointment booked in a special clinic in Dresden,Germany next friday the 9th March. Where we will find out if he will be excepted in one of those trials. And hopefully the national health system in germany will cover the costs.

In the meantime Fabian needs special equipment like a therapy chair and many more items to make his life easier and more comfortable for the future.

All of those things are very expensive and his parents are just unable to afford all costs by themselves.

Thank you for taking your time and reading my story.

Any donations are welcome and very much appreciated by Fabian’s Family.

Many thanks Yvonne (Fabian's auntie)