Cezy (11) pictured with her Mum, Elena
A Kilkenny youngster who lives with a life limiting condition will travel to Leinster House this morning (Wednesday) to meet with politicians and medical professionals to highlight the need for the HSE to fund her medication.
Cezy Fosca (11) was diagnosed with Morquio Syndrome at the age of two - it is a rare genetic condition which results in the abnormal development of the bones including the spine, along with fatigue and painful joints.
She has been on a drug Vimizim since 2011. Initially Cezy had the drug funded through a trial and the manufacturer, Biomarin provided the drug on compassionate grounds since 2014.
The HSE has confirmed that they will not be funding the drug. Deputy Bobby Alyward is attending the meeting and has raised the matter in the Dáil.