Today was a very hard day as we listened to the children, young adults and adults, parents, who live with Friedreich ataxia and how it’s slowly robbing them of life.
They begged that the state would fund the drug Skyclarys and it was heartbreaking to hear.
If
@MichealMartinTD @SimonHarrisTD and
@CarrollJennifer do any good in this dail term let it be that they insist that the HSE and Department of Health approve funding for this medicine and give hope back to the people who deserve it most.
#
OurLivesMatter# #
Hope#