As the world races to develop life-saving gene therapies for ultra-rare diseases, The Zebra and the Bear arrives at a pivotal moment — shining light on a family’s seven-year fight to transform despair into discovery.
Filmed over seven years, the documentary follows Amber Olsen, a Mississippi mother whose two-year-old daughter Willow was diagnosed with Multiple Sulfatase Deficiency (MSD) — a fatal, ultra-rare disorder with no cure. Refusing to accept her daughter’s death sentence, Amber launched a grassroots effort to mobilize scientists that ultimately helped MSD become part of a pilot gene-therapy program at the NIH — a milestone that could save countless children in the years ahead.
Over those seven years, Patrick captured the unfiltered reality of a family forced to do what the medical community and politicians were unwilling to do - begin the daunting task of finding a life saving cure.
Unfortunately, Willow passed away at age 11 before the clinical trials are set to begin next year. Her legacy is now poised to rewrite the future for families facing similar diagnoses.
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