A birthday to remember

28.June 2019

A birthday to remember

"Alexander has always been a dear child. When he walked out the front door in the morning, he would greet everyone on his way. He would bring his little sister to the nursery school and he used to love math.

Unfortunately, and suddenly, at the age of eight and a half Alexander fell ill with the incurably progressive genetic disease ALD (adrenoleukodystrophy). Over the next year, the disease quickly damaged his brain, adrenal glands and spinal cord. Today Alexander is in a wheelchair, he is blind and has lost all his motor skills.

In the past, I would always do very special things for his birthdays. For example, I invited a magician to Alexander's seventh birthday. On his ninth birthday, he was already in a wheelchair, but he could still see. Now we have to watch how Alexander can do less and less every day. He will leave us soon so this year, for his tenth birthday, I had a good idea. I invited to our house the RED NOSES clowns Margarita and Maria Genial, who knew him from the hospital.

It was so wonderful when the clowns were at our home! Normally Alexander has to take sedatives and painkillers every day because he suffers from painful cramps. Watching this is terrible for us as parents. But on the day the clowns came, he didn't need any medication. He was serene all day. After seeing this, I would love to have a clown with us every day!

Alexander, his sister and his cousin were sitting in the living room when the clowns came in singing. He turned his head in their direction as if he could feel them. The clowns sang 'happy birthday' in many languages, even in Japanese! Margarita's voice was so beautiful! The singing touched our souls. Also for Alexander, it was wonderful. The clowns played a game with him. They acted as if a louse was hidden in his clothes. The two touched Alexander so that he could feel them, because he cannot see anything anymore. His sister and cousin were also involved in the game. When the clowns were gone, we continued playing the game with Alexander. He laughed so much that day! It was a beautiful day for us as a family.

This year I have the feeling that I managed to make his tenth birthday beautiful once again. That I did everything I could. This feeling will accompany me for the rest of my life. Thanks to the RED NOSES healthcare clowns I can say: we got to have, one more time, a beautiful day together."
 

Alexander’s mom
 

*Story from: www.rotenasen.de