Sir, – I write on behalf of my four-year-old son James John (JJ) who is a casualty of this “health care system gone mad” referred to by Jonathan Irwin of the Jack Jill Children’s Foundation (November 8th) and others, including David Nelson (November 14th). JJ and his twin sister Lucy were born prematurely at 25 weeks and, while his sister did very well and is now enjoying preschool, JJ was hit with a tide of problems and is severely disabled having suffered a brain bleed. He is profoundly deaf, has cerebral palsy, no speech, is prone to serious chest infections and has to be constantly monitored and we love him dearly.
As JJ’s father, I’m just trying to do the best for my son and for the rest of my family but I’m exhausted with dead-end meetings with the HSE and it’s time that more people spoke up.
In JJ’s case, all we need from the HSE is a home care package of 8.5 hours, to replace our current support from the Jack Jill Foundation as JJ no longer qualifies for Jack Jill hours as he turned four years old on September 12th. Thankfully, Jack Jill is still supporting us, but it is running on empty when it comes to State funding.
For months now we’ve been writing letters, e-mails, making our case to politicians and attending meetings, but to no avail. Each meeting gets worse and the brick wall gets higher. Does this sound like a Government protecting the most vulnerable in society? No, it’s all about cuts and budgets. JJ deserves better. – Yours, etc,