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Kians Journey
This blog is all about our son Kian Rose. He has a rare degenerative disease called Hurler's Syndrome.
Kians Journey
This blog is all about our son Kian Rose. He has a rare degenerative disease called Hurler's Syndrome.
Blood and Marrow Transplant Services
Kian Rose
About Me
- Kian Rose
- I am Kian Jordan Rose and am 7 years old. At age 2 I found out I had Hurler's Syndrome, a life threatening enzyme disorder. I have endured several medical procedures and have underwent surgery on both my hips. I also endured surgery to correct the spinal conditions kyphosis and scoliosis. I had my second back surgery in November 2006 to adjust the growing rods. My third back surgery is scheduled for May 2007. I will endure about 10 more back surgeries over the next 3-5 years. These surgeries are scheduled for every six months. Check back perodically to hear about all about my continuing journey! My journey continues.... I underwent my third back surgery last week. My orthopedic surgeon says all looks good. The rods are still attached and I only need to wear my back brace to school. I have been promoted to the second grade next year and my parents are really proud of me.