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Missouri Fact Sheet

Tyler and Amber Widman adore their daughter Lybie. From a young age, she started talking in complete sentences, drawing, and counting. But there were other milestones in which she fell behind. When Lybie still was not walking at 18 months old, her doctor referred her to neurology.

The medical team initially thought Lybie had a rare disease called Charcot-Marie Tooth. She started doing physical and occupational therapy at home. Eventually, speech therapy was added to the list as she lost oral and motor skills. After further testing, the doctors revised the diagnosis to that of CIDP, an autoimmune disorder.

However, the neurology team decided this didn’t explain everything. With additional genetic testing, Lybie was diagnosed with metachromatic leukodystrophy (MLD) a full year after her first neurology referral. While getting the correct diagnosis was a relief, Tyler and Amber mourned the life they envisioned for Lybie as she rapidly regressed.

Now, Lybie has lost all ability to move with intention. She has no head or trunk support, is fed through a tube, and requires full-time care (which Amber has provided since quitting her job). Though Lybie’s younger brother, Sawyer, fortunately, did not test positive for MLD, he is a carrier. Today, the family continues to adjust to their new normal, which is centered around trying to make Lybie as comfortable as possible. Her only form of communication left is a smile, and they cherish each and every one.

 

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