Why We Created This WebsiteWhy We Created This WebsiteWhy We Created This WebsiteWhy We Created This Website
We found that a comprehensive source of information to support the families of newly diagnosed children was not available. While both Krabbe Families Facebook Group (“KFF”) and other sources provide a great way for families to seek information and connect with one another, new families often have to ‘re-create the wheel’ in order to find helpful information to support their child and family at the same time they are dealing with the emotional devastation of learning their child has been diagnosed with a terminal disease.
We also learned that the vast majority of doctors have never seen this disease before. It is helpful when speaking with your child’s doctor, to have a list of possible treatments, medications, etc., in order to find the best course of treatment with your doctor.
We are not seeking to create a source of information to assist families in their decision regarding stem cell transplants. Neither are we providing medical advice. We are simply providing a laundry list of possibilities for families to discuss with their child’s physician. In addition, there are many other practical ideas for support for both the fragile child and family members.
Please be clear that we are not doctors. We are simply parents – like you – who had a child affected by this disease. Please be sure to discuss all ideas with your doctors prior to trying them. There is no “normal” with Krabbe, and all children are unique and react differently to medications and therapies.
After publication of this site, Hunter's Hope Foundation started an initiative to create care centers for Krabbe families all over the United States (Leukodystrophy Care Centers). As part of that initiative, they also started creating Clinical Practice Guidelines (CPG's) for the medical care centers, and companion documents for the families affected by this disease. We encourage you to visit https://www.huntershope.org/family-care/leukodystrophy-care-network/lcn-clinical-practice-guidelines/ for updated care guidelines