Justin Weir

Speech at the Ulster Unionist Party Conference

#UUP2014

CHECK AGAINST DELIVERY

Good afternoon everyone

I stand here today, not representing one person or even one family, but an entire family circle.

I know Jo-Anne has already introduced me but my name is Justin Weir and I am a renal patient at Daisy Hill Hospital.

I am a husband to Sharon and father to my two sons, Jordan and Joshua.

I am also a second year student of Theology at Belfast Bible College.

I am a sufferer of an incurable genetic kidney disorder - Autosomnal Polycystic Kidney Disease.

Three and a half years ago I had to undergo a bi-lateral nephrectomy, which in simple terms means the removal of both my kidneys.

I now rely on dialysis - three sessions per week - four and a half hours per session.

That's thirteen and a half hours of my life every week.

Dialysis is as tough on the body as it is the mind.

It is literally draining and results in extreme tiredness.

The disease I have comes from my mums family line

To date it has affected twelve of my family circle.

My Grandmother died in her mid fifties as a direct result of the disease.

One of my mums sisters died when she was in her mid sixties, this disease was a contributing factor.

Another of her sisters has a donated kidney,

My mums brother is dying in a hospital in England as we speak due to this disease,

Three of my cousins – that we currently know of – have this disease.

My nephew, who also has Asperger’s, has the disease and everyone in my own immediate family including my mum, brother, sister and I have the disease.

We cover every aspect of the spectrum with regards to kidney organ donation and dialysis.

My brother will hopefully never need dialysis as his wife is donating her kidney to him on December 9th this year,

I have waited three and a half years on dialysis and God willing will receive a kidney from my good friend Mark on November 25th this year,

My sister will almost definitely end up on dialysis as she has no possible live donor on the horizon,

and my mum, who has been on dialysis nearly twenty years will end her days on dialysis.

I ask you, what kind of signals must the younger generation within my family circle be getting from all of this?

Imagine the Soft Opt-Out System had been in place years ago, I would almost certainly be standing here telling you a very different story.

A light at the end of a very dark tunnel came in the form of a possible change in current organ donation laws, led by Jo-Anne.

I remember thinking; here is a once ordinary Banbridge girl doing her very best to change something that will affect me, a very ordinary Banbridge boy.

So, when she asked me to support her by being a public face for her consultation process, along with her son Mark, I felt very privileged.

If there are any sceptics – come and spend some time with me or any other renal patient and see what we go through – Jo-Anne has - she is genuine and passionate about organ donation!

We are not data, we are not statistics, we are very real people with a very real need and Jo-Anne’s courage and commitment to modernise the law is both commendable and important.

I will leave you with this thought;

I often question – If Jo-Anne hadn't stepped forward to become our voice, as charities and as families, who would fill that void and where would we be??

I know I speak for every renal patient and their families when I say a very sincere thank you to all the staff involved in any way in our local renal units.

They make a difficult situation a little easier for all of us.

From my family and I to Jo-Anne and her family – you have our deepest thanks and support.

Thank you very much.