Clowning around for a good cause

National Rare Disease Day was celebrated on 27 February and Carpe Diem Nursery School joined the drive to raise funds for one of their pupils.

Little Ewan Griffioen was diagnosed with Pompe Disease in 2010. His body does not produce the acid alpha glucosidase enzyme (GAA) that helps break down the complex sugars (glycogen) that is the lysosomes (tiny garbage collectors in the cells) into simple, easy to digest sugar (glucose) in the muscle. His muscle do not work as they should which affect his lower limbs. He cannot walk yet.

According to his mother Marietjie, they are continuously busy with therapy and he is progressing well towards walking on his own. “It is critical for Ewan to continue with his current therapy sessions to achieve this. Our medical aid only covers 24 sessions in a year and he needs about 100 sessions with his physiotherapist, 48 hippotherapy and 48 hydrotherapy sessions,”she said.

The headmaster of the school Annelize Floor said the school decided to hold a fund ay where all parents, children and teachers got involved. “Ewan visited the school with his mom and had a lovely time playing with balloons and handed out some sweets to other children. Everyone had a little blue ribbon on their T-shirts to show their support to Ewan and rare disease day,” said Floor.

She added that the theme and dress code for the day was clowns and teachers and pupils joined the fun to see who can be the funniest clowns.”Carpe Diem got involved with Ewan in January

2014 after hearing about his story. The children at Carpe Diem learned how blessed they are and how to give something to an underprivileged child.”

For more information or to get involved with Ewan contact Annelize at 082 568 4230 or Marietjie at 082 318 6275.