New website is ‘go-to’ point for children needing palliative care in Ireland

Parents of children with life-limiting illnesses have spoken out about a lack of awareness of palliative care options for families.

Brian and Sharon Thompson, who suffered the tragic loss of their nine-month-old daughter Victoria, said more needed to be done to support and inform families in need.

“Victoria had an incurable, untreatable rare condition which left her in constant and severe pain,” said Sharon. “Her nerve endings were un-insulated. She also had horrendous symptoms. Our first question was ‘how do you fix it?’ Then we were told — ‘it can’t be fixed’.”