Tonight my heart is especially heavy and hurting for many members of my GFPD fam ily who are going through extremely challenging times. PBD-ZSD affects every aspect of our lives and impacts/puts extra stress on our relationships with our spouse/partner, child(ren), family and friends, our jobs, finances, and life in general. The grief each of us feel and are working through is different depending on where we are along this journey and can vary from day to day, but it is real and sometimes seems completely overwhelming. Will you please lift up little Harleigh's family tonight? Harleigh is just 5 months old and she is severely impacted by PBD-ZSD. She is really struggling right now and she may not have a lot of time left here on Earth. We know that only the Lord knows the number of Harleigh's days (and ours) but her little body seems to be getting very tired. Would you join me in praying for a miracle, for healing, for comfort, for peace that passes understanding for the Web...
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 family's journey.