Jordan Paul Janeway was born October 3, 2012 and passed away July 1, 2013 due to complications from SCID (Severe Combined Immunodeficiency). Jordan was a beautiful baby boy with blonde hair and large, captivating blue eyes. His unique smile and boundless patience endeared him to family, friends, nurses, doctors, and anyone else who met him. Jordan was a great blessing to our family and made a difference in many lives. His passing is a great loss to our family and to the world.

Greater than one in fifty thousand children is born with SCID, which results in a severely compromised immune system. When SCID is diagnosed as part of newborn screening, this immune deficiency is often completely reversible. When it is not identified at (or near) birth, the virus (or viruses) that leads to diagnosis of SCID becomes deadly - as it was with Jordan - since there is no immune system to fight it.

As a result of its impact, SCID is now part of national newborn screening. It is actively screened, however, in only 30 states, including Oregon. As of June 5, 2015, 13 other states plan to implement screening in during the remainder of this calendar year. That leaves seven states, including Montana, Nevada, and Arizona, who do not currently screen for SCID or have a plan to implement SCID screening. Our goal at the 2013 event was to save families the agony of losing a child to this completely reversible condition by raising awareness for and encouraging implementation in the currently non-screening states.

 

 

The Friends of Jordam Memorial Fun Run & Walk raised $4,444 for Jordan's family with the help of 10 sponsors, 183 participants, and about 20 volunteers. Thank you to all involved.