Did you know that 1 in 20 Aussie kids are born with a genetic disease or birth defect? That’s one in every classroom!
This August, we’re taking on the Ks for Kids challenge - walking or running to raise funds for Children’s Medical Research Institute, supporting scientists who are working today to find cures for tomorrow.
This cause is deeply personal to our family. Our beautiful son Nikolai had NEMO syndrome, an ultra-rare genetic disease caused by a mutation in the NEMO (IKBKG) gene. The condition predominantly affects boys and can cause severe immune system complications, leaving children vulnerable to serious and life-threatening infections. Nikolai sadly passed away following an infection, a heartbreaking consequence of the challenges that can come with this devastating condition. Because NEMO syndrome is so rare, many families have never even heard of it until it changes their lives forever.
We walk in his memory and in honour of every child and family affected by rare genetic diseases. Research gives families hope, hope for better treatments, better outcomes and one day, cures.Â
Every step we take is for our son and for all the children still fighting. Your donation will help us go the distance and fund vital research. 💙
