Caring 4 Krabbe Kids
A Resource for Families Dealing With Krabbe Disease

Introduction

Why Create This Website?

We found that a comprehensive source of information to support the families of newly diagnosed children is not available.  While both Hunter’s Hope and the Krabbe Families Facebook Group (“KFF”) provide a great way for families to seek information and connect with one another, neither of them provide a specific ‘table of contents’ for families to search for specific questions.  These 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.


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Our Mission

Our mission is to obtain and distribute knowledge acquired by families caring for Krabbe children in order to serve as a source of information and support to other families with Krabbe children-- especially those who are newly diagnosed.

Disclaimer

 

Nothing in this website should be construed as an attempt to render a medical opinion or an attempt to participate in the practice of medicine.   All topics in this website are merely starting points for discussion with qualified medical professionals of your choosing.  No therapy or medication should be started without first consulting with your child’s doctor.  Information provided here may not be up-to-date, or precise and true and correct.   Past successes recorded here are not indicative of future results, nor are they absolutes.  Use any information provided here with prior approval from your child’s physicians.  

 

Sources of Information

The majority of the information summarized here is based on what we gathered over the five years of our son’s life, along with published, reputable information on Krabbe disease.  Previously, there was a website – the Krabbe Family Message Board, where much of our historical information was obtained – but that website has now been replaced with the KFF on Facebook.  We have reviewed many months of listings on the Krabbe Message Board (the old site that no longer exists) to accumulate as much information from other families as possible.  None of the information from the Krabbe Message Board has been verified in any way. 

In addition, we have received direct input from three of Dylan’s care professionals.  (Mindee Jones – Occupational Therapist, Sandra Zaccari – Physical Therapist, and Trisha Hothorn - Licensed Clinical Social Worker). 

If you have helpful advice for other Krabbe families, please use the contact form on the "About Us” page of this website to communicate your ideas to us.  We will incorporate those ideas in future updates of this site.

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