Meet Kian Rose

Our first and only child Kian, was diagnosed with Hurler's at an early age of 15 months. Doctors at the University of California at San Francisco (UCSF) recommended a bone marrow transplant. We were told that the transplant was only a treatment and is not a cure. After four months of intensive searching, an unrelated donor was found. At two years of age, Kian received a bone marrow transplant. He remained in the hospital for nine months, where he received excellent care. We are very thankful to the unrelated donor and especially to the team of doctors and nurses at UCSF.

Kian endured several medical procedures including a broviac which was placed in his chest to receive medications and have blood drawn. In addition, he had a tracheotomy placed in his throat to allow him to breath and a gastrointestinal tube placed in his stomach so that he could eat. Kian was placed on 16 different medications. He no longer requires these devices and is currently only taking one medication.

He had surgery in 2003 to repair an umbilical hernia. In April and May 2005 Kian underwent surgery on both hips. In May 2006, he had growth rods placed in his back to stabilize his spine and allow his torso room to grow. The hope was that the rods would stay in place until 2010 to avoid having to fuse Kian's back. For the past two years, Kian has had back surgery every six months to have the rods lengthened a half inch each time. Unfortunately, in May 2008, x-rays showed the rods had completely detached from his pelvis. On May 29, 2008, Kian had additional surgery to have the rods removed. Through all the surgeries, Kian has made great progress and the journey continues.

Today, Kian is an active 8 year old currently attending a second grade education program at a local elementary school. He enjoys playing with his classmates. Kian loves to read, sing, color, watch videos with his Mom and play basketball with his Dad.