Parents share Emily's story in bid to raise awareness and fundraise for a cure
By Nub News Reporter 14th May 2026
A THURROCK couple have stepped into the limelight to help boost their ailing daughter's fight for life and raise awareness of a devastating and extremely rare neurodegenerative disease
Daniela and Mihai Chiperi from Southwell Close, Chafford Hundred, are reaching out as parents "carrying both heartbreak and hope" asking for help and sharing their two-and-a-half years old daughter Emily's story with the community.
The couple have lived in Thurrock for almost six years and their daughter was born at Basildon Hospital.
Daniela says: "Emily was once a joyful, energetic little girl who developed completely normally until around 16 months old. Then we began noticing subtle but frightening changes.
"Her balance became unsteady, her words started disappearing, and the little steps she had proudly mastered slowly faded away.
"After countless appointments and tests, Emily was diagnosed with Infantile Neuroaxonal Dystrophy (INAD), a devastating and extremely rare neurodegenerative disease caused by a mutation in the PLA2G6 gene. INAD progressively robs children of their ability to move, speak, see, and eventually even swallow.
"As parents, watching this happen to our daughter is unimaginable. But despite the pain, we are holding onto hope.
"Emerging advances in gene therapy are offering families like ours a real possibility for the future not simply treating symptoms, but addressing the root cause of the disease itself.
"Researchers working alongside the INADcure Foundation are actively preparing for an upcoming clinical trial focused on developing a treatment for INAD. Critical funding is still needed to help advance this therapy through clinical trials and ultimately toward approval, giving children like Emily hope for a future that currently does not exist.
"We are now working tirelessly to raise awareness and seek funding for Emily's fight.
"Every donation, every shared post, and every message of encouragement helps bring us closer to that possibility not only for Emily, but for every child and family affected by INAD.
The couple's go funding page can be found via this link.
Other social media sites related to the appeal are below:
https://give.inadcure.org/team/789398
https://www.instagram.com/emilychiperi?fbclid=IwY2xjawRyg0JleHRuA2FlbQIxMABicmlkETBoWVZ6cXdQemtiaHRXREpmc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHiL2nvwDRCGsJc7xVmj0octVihvTMQB94QIjWZO43WCO6-3WLlB6c-e3935G_aem_Hhy55BeCyH1_Ib82dwBYHw
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