My name is Diana Moore and I live in Springfield Missouri with my son Ferrell and my granddaughter Regann. At three days old, Ferell received a call from the doctor at Children’s hospital saying Regann had Krabbe Disease which was identified through newborn screening. The doctor said it was critical we come to the hospital immediately, as we had only a few days for testing and to locate a match for a potential transplant treatment. Without this transplant, they told us Regann may not live past the age of two. It was a devastating call. We had never heard the word “Krabbe” before. We were so scared not knowing what could happen to her. We packed up and left the next day. There were so many tests and doctors for a little three day old baby. So after all of the tests results came back she was admitted to the hospital and began chemotherapy. They identified a donor and at 30 days old, she received her transplant. Everything was so uncertain, but we felt the Lord carried us through and now she is our miracle baby at 5 years old. Although I’m Regann’s grandmother, there are times that I feel like her mother – being that my son and Regann have been living with me for 4.5 years of her life. I enjoy her so much! I pray I’ll continue to be as healthy as I am to care for Regann’s needs. I am her caregiver while her dad is at work. Caregiving for Regann is rewarding to me because she shows how much she loves her grandma. She’s a big joy in my life and I love her so much! Before I knew about KrabbeConnect, I didn’t have much support. Church was my original support until I stopped attending full-time. I have close friends that offer help but they are in their eighties and not able to do for Regann as far as lifting her. Because of this I can’t let them sit with Regann even for an hour so that I can get a break or for my medical appointments. So I do this when Regann’s dad has his days off from work. I do worry if I’m not around to help her dad take care of her, who will? This is a big worry. God will continue to be with us. I will never give up, because they both need me to be strong. And I’m grateful every day for my beautiful little Regann and the technology that allowed her to be in our lives. My advice to other grandparents is to call a friend, or your pastor if you have one. Reach out to Mary and Anne at KrabbeConnect. I’ve learned I’m not alone and I have support when I need it most!