Tennessee Fact Sheet – Hollandsworth Family

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Tennessee Fact Sheet – Hollandsworth Family

 

Willow was in hospital being treated for dehydration when results from her brain MRI from three weeks prior confirmed she has metachromatic leukodystrophy (MLD). When the neurologist delivered this news, Michelle found out there was no plan of care for MLD. Instead, the doctor simply said, “We will keep her as comfortable as possible.” Michelle and her husband took turns going to the bathroom to break down while the other held Willow and tried to fight back sobs.

Before being discharged from hospital stay, Michelle distinctly remembers a moment that occurred while holding Willow in her lap waiting for a procedure. The patient ahead of Willow was a sweet young boy who was diagnosed with leukemia. As Michelle sat there with her seemingly normal child, legs yet to curl, spine yet to curve, voice yet to disappear, all she could feel was jealousy because at least this little boy’s disease had a chance at being treated. Willow didn’t even have a chance. Michelle felt truly helpless.

Willow lost all body control within a year. These days, she requires 24-hour care, has the constant threat of asphyxiation, and severe scoliosis. She is happiest when she’s outside and spends time with the people and pets she loves. Her worst days consist of crying, joint stiffness, and neurological pain. Every day is a challenge. Whereas other children meet on the playground, have sleepovers, run around, and enjoy their favorite treats, Willow can’t do any of those things. To Michelle, newborn screening would have made a difference.

 

 

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