Before September 2018 I had never heard of Walker-Warburg Syndrome. Little did I know how it would change my entire life and strike fear in my heart. My son Christian was born with Walker-Warburg and it took his life after just 29 days.
WWS is an inherited form of congenital muscular dystrophy. Children born with this disease have affected skeletal muscles. They usually appear floppy at birth and the muscle weakness progresses overtime. They also have varying severity of neurological issues. It can effect motor control, the central nervous system, and learning abilities. Children with this disease have an average life expectancy of three years or less. Those years are generally filled with differing degrees of medical intervention.
For couples like us who have defective genes that can cause WWS, there is a 25% chance that every child they conceive will have the disease. That’s a one in four chance for every child. Such heartbreaking odds. Click here to read the post I wrote when we were finally given the official diagnosis and what it means to our family.
If you, a friend, or a family member are affected by WWS, there is a support group of families on Facebook (click here). Here you can share in each other’s joy and sorrow over having to deal with such a heartbreaking disease. It helps to know you’re not alone.
If you, like me, want to do more research it is difficult to find a lot of information on the subject. Because of its rarity you have to do a lot of digging to learn as much as you can. This is a great place to start; Genetics Home Reference. Recommended by our genetic counselor, it is a very reputable site for information on Walker-Warburg Syndrome. Here is another site that features some more information, Genetic and Rare Diseases Information Center.