In celebration of Rare Disease Day on February 28, 2022, the WSS Foundation led a storytelling experience featuring individuals with WSS and their parents. This story comes from Jaimie-Lee Cripps in Australia as she reflects on her son’s beginnings in his rare journey and the hope for his future.

By: Jaimie-Lee Cripps, Australia

It is almost rare disease day. It’s made me take a look back on our journey, from finding a diagnosis for Kohen to everything he has been through in his short 4-and-a-half-years, so far.

What a wild ride!

I remember when he had his heart surgery. It was his very first operation at 7 months old.  I thought that surgery was going to solve all his problems, but it was just the beginning.

He is such a strong and resilient little boy. He has already come so far and keeps showing us how determined he is.

Some days are HARD!

Countless hospital admissions and surgeries, endless blood tests, all the unknown, uncertainty, and the endless therapies.

It’s heartbreaking to see your child struggle and watch his frustrations because he can’t get up and run around with his siblings or tell us what he wants and needs. Watching how easily he tires out from something that may be so simple for other kids.

Our hope for Kohen is to live a happy and independent life, to someday be able to walk, talk and eat foods safely.