We are an originally Hungarian Family with two children living in Texas. Stony our son is 8 and Suzi our daughter is 6 years old.
We are ordinary people with an extraordinary life as our destiny has granted us a huge challenge for this life.
Our son Stony was born with a rare genetic disorder called Prader-Willi Syndrome.
Prader-Willi Syndrome is a complex genetic disorder what affects many part of the body and results in a number of physical, mental and behavioral problems.
We are the delegates for the International Prader Willi Syndrome Organization (IPWSO).
Our world was completely changed when Stony was born. We live our life full of unusual, interesting, unexpected, awkward, hard or delightful situations what we have to solve on an every day basis using sometimes supernatural efforts and love.
These situations make us laugh and make us cry but definitely make us live our life completely full.
Stony our son has Prader-Willi Syndrome (PWS), prominent Sensory Processing Disorder (SPD) , Obsessive Compulsive Disorder (OCD), Severe to Moderate Learning Difficulties (SLD), very Challenging Behavior (CBF), mild Autism and mild mobility difficulties. He struggling with a prominent scoliosis and is fighting with his monster what is related to his food issues.
Stony is on a very strict special diet what is gluten free, low carb and sugar free.
This diet is a game-changer and it helps him enormously. But we ourselves have also realized the huge beneficial and restorative effects of this diet.
We cook and bake every day as this factor is very important in Stony’s life so you can also find a good selection of our best and well polished recipes on the site.
We have started our family blog to share others some moments and thoughts of our life, with those who might like to laugh, cry, learn or wonder along with us! 🙂
Our intention also is to help other families in a similar situation to cope and manage but mostly to enjoy and love the every-day challenges and try to get out the best of this extraordinary life.