A Maltese family is appealing for support after launching #SaveLilly, a campaign aimed at raising awareness of WWOX Syndrome, an extremely rare genetic condition affecting their 11-month-old daughter.Jeanelle Camilleri Magro, Lilly’s mother, reached out to Lovin Malta in the hope of raising awareness about the condition and the challenges faced by children living with it.“Lilly” is not the child’s real name, but a public name chosen by the family to protect her privacy while advocating for her future.According to her family, Lilly has WWOX Syndrome, a rare genetic disorder that causes severe developmental challenges, seizures and other serious neurological complications. There are believed to be around 150 known children worldwide living with the condition.At just 11 months old, Lilly is unable to walk or talk and requires ongoing therapy, specialised equipment and daily care.The family is currently raising funds to help provide essential equipment and support, including a standing frame, shower assistance equipment, a specialised stroller and therapy services.They also highlighted ongoing efforts to develop a potential treatment for WWOX Syndrome. According to the family, research is currently in the IND-enabling stage, a key step before human clinical trials can begin. However, significant funding is still needed for the treatment’s development to progress.The family explained that any donations raised will first go towards Lilly’s immediate care, therapy and equipment needs. Should fundraising exceed those requirements, remaining funds will be directed towards supporting the WWOX Foundation and treatment research.“Every donation helps. Every share helps. Every person who notices helps give children like our daughter a chance,” the family said.Those wishing to support the campaign can follow the #SaveLilly initiative and contribute towards helping Lilly and other children affected by WWOX Syndrome on the donation website.Share Lilly’s story to help raise awareness of WWOX Syndrome and reach more people who can support her journey!•