“Unconditional, Raising a Glass Child with a PACS1 Sibling” is a short documentary about our family, directed by Jon Dorflinger and produced by Bo Bigelow and Daniel DeFabio, founders of the Rare Disease Film Festival.

 

The film features Charlie and his younger brother Finn, who has PACS1 syndrome (also known as Schuurs-Hoeijmakers syndrome), a rare genetic mutation that results in global developmental disability. The phrase "glass child" refers to a sibling who learns to be invisible, or may be given less attention, because their brother or sister has more intense or dramatic needs, as referenced in the 2010 TEDx Talk by Alicia Maples.

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The film has been shown at events and conferences such as BioTech Week Boston and the Global Genes Conference, where I participated on a panel about raising a sibling of a rare kid, and is featured on The Disorder Channel. I would love to bring this film to your event and have a conversation about siblings and parenting a kid with a disability, participate in a panel discussion, facilitate a breakout session or engage in a supportive circle process for parents.