Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our PBD-ZSD journey.
I learned this morning that two more little ones with PBD had left this world and the arms of their parents for the arms of Jesus. It is so tough, because although I haven't met either of these families in person I have had the chance to get to know them a bit through our GFPD Family Support Group.
Please pray for these families and all families who have lost a child. My heart breaks.
Ellena Page, August 26, 2011 - June 12, 2012 United Kingdom
Kevin Feldtmann, May 6, 2009 - June 12, 2012 South Africa