'Our son is one of 16 kids with this condition. He might not live to Christmas'

11-month-old Jack is one of only 16 children worldwide with a rare, life-limiting genetic condition involving the PPFIBP1 gene, leaving him blind, having seizures, and unlikely to walk or talk. His parents are seeking support and information from other families facing similar challenges. With uncertain life expectancy, they aim to make Jack's time comfortable and are crowdfunding renovations and equipment while reaching out to build a supportive community for families with this unnamed condition.