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Until there’s a cure, we won’t stop fighting -#curekrabbe ... See MoreSee Less
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It's Thursday.
For many, it's just another day. For some Krabbe families, it's another day of watching a loved one take only 4–5 breaths a minute, when a healthy toddler would normally breathe 20–30 times a minute. Others are carrying the unimaginable weight of grief after losing a child.
This is the reality of Krabbe disease—countless hours of caregiving, constant uncertainty, and heartache that never takes a day off.
Until there's a cure, we won't stop fighting for every family. 💙
#curekrabbe #KrabbeDisease #RareDisease #CaregiverReality ... See MoreSee Less
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💙 An oldie, but an important reminder of how far we've come.
As we continue our focus this week on the burden of caregiving, we invite you to watch this video and reflect on the reality many families face after a newborn is diagnosed with Krabbe disease.
When a baby is diagnosed early enough to receive a stem cell transplantTypically this refers to a bone marrow transplant with the goal of replacing non-working cells with healthy working cells. Bone marrow is a rich source of stem cells that have the unique ability to, hope exists—but the journey is far from easy. Families often spend months in the hospital, take extended time away from work, put everyday life on hold, and must protect their child from even common illnesses while their immune system recovers. It's a path filled with uncertainty, sacrifice, and unwavering love.
The hopeful part of this story? Since this video was created, 20 states now screen newborns for Krabbe disease. That means more babies have the opportunity to be diagnosed before symptoms begin, giving them access to treatment that wasn't possible for so many families before them.
That progress didn't happen by accident. It happened because families shared their stories, advocates raised their voices, researchers never gave up, and donors and supporters like you believed this community deserved better.
Thank you for helping us move from heartbreak toward hope. There is still work to do, but together, we're changing the future for families affected by Krabbe disease. 💙
... See MoreSee Less
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This week, we're focusing on caregiver burden. As proposed Medicaid cuts threaten the supports many families rely on, it's more important than ever to recognize the realities of caring for a child with Krabbe disease.
While these numbers may seem overwhelming, we see hope. Early diagnosis and treatment can reduce caregiving demands and improve quality of life.
As a community, how can we help families shoulder this burden? Could financial assistance for in-home care, respite services, adaptive equipment, travel, or home modifications help children remain at home with their families—where they belong—while reducing strain on both caregivers and the healthcare system?
We'd love to hear your ideas. What support would make the biggest difference for your family or one you know? 💙 ... See MoreSee Less
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July is Bereaved Parents & Caregivers Awareness Month. 💙
For many in the Krabbe disease community, grief doesn't have an end date. It becomes a lifelong expression of love for an individual who should still be here.
Whether your loss was recent or many years ago, we want you to know that you are remembered, your loved-one is remembered, and your journey matters. Grief looks different for everyone, and there is no right or wrong way to carry it.
Registration link in comments!
#RememberingOurWarriors #KrabbeConnect #BereavedCaregiversMonth #curekrabbe ... See MoreSee Less
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Every child deserves the chance that early detection can provide.
Weston's story is heartbreaking, but his legacy has the power to save lives. Wisconsin families are now calling on their state to add Krabbe disease to the newborn screening panel so babies can be identified before symptoms appear—when treatment has the greatest chance to make a difference.
At KrabbeConnect, we stand with these families and with every advocate working to ensure no child is diagnosed too late. But advocacy is only one part of the journey. Families affected by Krabbe disease often face overwhelming medical, travel, equipment, and financial challenges. Through our patient assistance programs, education, and research initiatives, we work every day to help lighten that burden while driving progress toward better treatments—and ultimately, a cure.
We can't do it alone.
💙 Please read and share Weston's story.
💙 Help amplify the call for newborn screening in Wisconsin.
💙 If you're able, consider supporting KrabbeConnect so we can continue funding critical family assistance programs and advancing research that gives families hope - krabbeconnect.org/donate/donate-programs-events/
Together, we can honor Weston by helping ensure more children have the opportunity for an earlier diagnosis—and a brighter future.
#NewbornScreening #KrabbeDisease #RareDisease #BlueberryBoy #KrabbeConnect #CureKrabbe #HopeThroughAction ... See MoreSee Less
'Blueberry Boy' Weston Kyser's legacy fuels push for newborn screening for Krabbe disease
www.wxow.com
A Black River Falls family's life was turned upside down when their newborn was diagnosed with a rare and fatal metabolic disease.2 CommentsComment on Facebook