Emma is currently 4 years old an enjoying 2 days a week of preschool and enjoying ballet classes. Diagnosed at just a few weeks old we have always known she had KFS. Her KFS includes :
-fused vertabrea in neck (loss of ROM)
- fused vertabrea in back
- exposed spinal cord in spine
-sprengles left shoulder (loss of ROM) -fused ribs in left side (causing 20% less capacity in lung)
-short neck and low hairline
-some numbness and pain (new this year)
So far Emma has had two surgeries. One uretal reimplantation at age 2 to fix reflux in kidney. It was an optional surgery we are glad we chose because her ureter had no blood flow. Then at age 3 we had the Woodward procedure done. It has given us a small increase in ROM over the year but cosmetically was not a benefit as her shoulder is deformed to be very short. We are up in the air if the surgery was helpful. It did however provide the info her spinal cord is exposed.
We don’t restrict Emma from much besides bouncy houses and trampolines and she is a total dare devil. She climbs to the top of jungle gyms which makes my heart soar since DRs told us she wouldn’t walk.
We are currently searching for a neurologist as Emma is having some experiences with pain and numbness. We see an ortho at Lucille Packards Stanford and a Urologist and Geneticist at our Valley Children’s. We love our KFS community. Putting Emma into preschool we learned from other families and haven’t had to struggle as much, knowing what to watch for and how to help. We are proud of our rare girl and wouldn’t change a thing about her.