My task as a mother is to help my children fulfill their potential. If my son wants to be a physicist, I will help him attain his goals. And if Sarah’s potential is to laugh, I will encourage her and enable her to be happy.

Sarah was born 22 years ago, with a rare genetic disorder called ML4, which causes severe damage. Children with ML4 neither walk nor talk, and suffer from very poor eyesight. Despite all this, Sarah has always been a sweet, smiling, lively girl. She grew up in our home, with our other children and our friends’ children, and we have always included her in our life, as much as possible.

But our world is not her world. Sarah has a world of her own: She spends her days with people like her, in facilities adapted to her needs, where she feels happy and content. Like every child who grows up and spreads her wings, she also wants and needs to leave her parents’ home. She will become bored here with two ‘old people’ like us… But unlike healthy children, she cannot leave home on her own.

It is our duty as her parents to give Sarah everything that she needs and what is good for her. Today we understand that above anything else, she needs a home of her own – a home where as a grownup, she can live in her own world, with her friends and the activities she enjoys, a home where she can be happy, and continue to smile and thrive every day of her life.