21-year-old Chloe Feighery has a deep love and appreciation for her younger sister Heidi, who is just one and a half years old. When she learned that she was becoming an older sister, Feighery instinctually knew that she would do whatever she could to care for Heidi. And last month, she took her role to new heights – literally. You see, Heidi was born with an ultra-rare multisystem genetic disorder called Vici syndrome. With less than 100 known cases worldwide, it’s hard to know what this diagnosis means for Heidi’s future; more research is needed to learn not just about this disorder, but how to best treat or even cure it. In the interim, the Jack and Jill Foundation has been providing nursing and supportive care to Heidi and 400 other families in Ireland. So, reports Roisin Butler of DublinLive, Feighery abseiled down Croke Part to fundraise for the Jack and Jill Foundation and honor what the foundation has done for her sister.

While Heidi can breathe independently, she does utilize a feeding tube for nutrition. Since being born, Heidi requires full-time care. This has put some strain on the family. The Jack and Jill Foundation has provided a nurse for the Feighery family who provides 25 hours of service each month. Feighery’s participation in the abseiling challenge has raised €5,678 (approx. $6,134.26) for the Foundation. You can donate to the fundraiser until August 30, 2023. If you would like to donate, you may do so here.

About Vici Syndrome

Caused by EPG5 gene mutations, Vici syndrome is an ultra-rare genetic disorder characterized by cataracts, hypopigmentation of the hair and eyes, cardiomyopathy, combined immunodeficiency, and corpus callosum agenesis (failure to develop). It is inherited in an autosomal recessive pattern; those affected must inherit one defective gene from each parent. This condition is often diagnosed either before birth or just after birth. Right now, treatments are supportive.

While there are still many unknowns with Vici syndrome, the following symptoms have been associated with this disorder:

• Hearing loss
• Global developmental delays
• Short stature
• Intellectual delays
• High palate
• Gray matter heterotopia
• Hypotonia (low/poor muscle tone)
• Failure to thrive
• Dysphagia (difficulty swallowing)
• Feeding difficulties
• Recurrent respiratory, gastrointestinal, or urinary tract infections
• Seizures

Learn more about Vici syndrome.