DO YOU HAVE A CHILD
NEWLY DIAGNOSED WITH KRABBE DISEASE?
Our hearts break when there is another little person diagnosed with this heinous disease or any leukodystrophy. It probably feels as though your world is caving in and the pain is unbearable; meanwhile, you are trying to navigate the next best steps for your child. You are not alone; there is a community of Krabbe families that are walking or have walked a similar path. As wretched as this journey is, there is love and support to be found.
We Recommend You…
- Contact one of the foremost doctors for Krabbe Disease:
- Contact Hunter’s Hope: they are a leading organization for Krabbe disease and offer multiple avenues for leukodystrophy family support. They also maintain a Worldwide Registry for Krabbe kids.
- Visit Caring 4 Krabbe Kids: this is a vital and extensive resource for affected families.
- Join the Facebook Krabbe Community: find solidarity, answers to questions, and people who care.
- Get Financial Assistance: the Baby Reesa Foundation, The Jackson Project, The Liam Hammonds Memorial Foundation, and the Peace, Love, and Trevor Foundation offer financial help for families affected by Krabbe Disease.
- Rare Disease Advocacy: Learn about tools to become a rare disease advocate through the Global Genes Network.
Connect with Us
If you are wrestling with God and trying to understand his purpose in your pain, we hope to be a safe place where you can struggle and ask tough questions about faith and hope in the midst of your suffering. We can wrestle with God together!
This journey looks different for each child, parent, and family; Krabbe disease causes every one of us to be faced with painful decisions that no one ever imagines having to make. We long for there to be grace in the differences and strength in the similarities. Our leukodystrophy community has been one of the greatest gifts that has arisen out of our brokenness over Judson’s suffering and death—we hope it might prove to be a gift to you too.