Mother reveals her baby son was born with a genetic condition so rare, it doesn't have a NAME yet

A mother is begging doctors to do more research into treatment for her son’s genetic condition which is so rare it does not have a name. Further exams found that Leo suffers from a genetic condition which affects his protein coding TBCD gene and is so rare, it doesn't have a name yet. Lucinda Andrews, 32, from Chatham, Kent, shared her anguish as her six-year-old son Leo pictured, was born with a genetic condition so rare, it doesn't have a name, a set treatment plan or a known cure Leo was shortly moved to a neonatal intensive care unit after his birth. Doctors found Leo has a genetic condition which affects his TBCD gene, one of the protein coding genes. Lucinda, who had been contacting specialists from all over the world, revealed Leo suffered breathing issues and seizures due to his rare condition Lucinda said she isn't sure what Leo's life expectancy was, and that she takes life day by day in hopes someone will find a cure 'There are already gene therapies that exist for example the SMA infusion that is available on the NHS since March this year.