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IT WAS JUST another news story for Susan Mitchell of the Sunday Business Post, and it’s just a tough part of the job for Minister Harris. But for me as a mother to a CF sufferer it was a dark, dark night knowing the only hope I had for my son is gone.
Orkambi is a groundbreaking drug
It’s the only drug that would target the underlying cause of CF. Just a few weeks ago TJ and Anna-Rose had their photo posted on the TheJournal.ie.
It shows two happy, carefree children, playing in the leaves before heading into the zoo for a family day out. That’s what CF is. It’s all about normalising what’s not normal.
TJ had 2 cannulas in both arms under that big red coat. That morning we woke TJ to inject him for an hour with IV antibiotics. After IVs he had a quick breakfast before another hour of nebulised treatments and physiotherapy. His sister got to relax and play.
Going to the zoo could only happen in the morning so we could rush back for afternoon IVs. At 3pm we hooked him up for 2 hours of more IVs. At 5pm it was back to more nebulised treatments and physio.
Bedtime isn’t easy for TJ. He lies awake processing his day, wondering why his IVs and treatments are so unfair as his sister lies beside him sleeping soundly. He is always thinking ahead to the next round of IVs. At 11pm we need to wake him again for another hour of IVs.
That is not a normal or fair day for any 6 year old
I can’t understand how the government and the HSE can sleep at night knowing that this decision shortens TJ’s life, and takes away any chance of a decent quality of life.
TJ always looks happy and healthy… just like any other senior infant boy. Unfortunately the stark reality is that CT scans and xrays show a different picture. He has serious lung damage for his age which we treat aggressively, hoping it will lengthen his life.
When TJ was diagnosed our world was turned upside down, but once we picked ourselves back up, myself and Paul decided to be positive. For six years we have never missed a treatment, hoping that we would give him a good start and that new drugs were coming.
We had hope
I thought that even though CF was a life sentence, science would improve. That we just needed to keep him healthy until the drugs came along.
But last year we were shocked to learn all our efforts were in vain. TJ has serious progression of CF and we don’t have the time we thought we had. There are children his age in America taking Orkambi.
Why do they have the right to a better and longer life?
Like all CF mothers I will fight this until the end. But that isn’t right. I should not have to fight for basic care for my son. We will not let this rest Simon Harris.
On the 7th of December there is a march to the Dail. We ask all our friends who can to come and support us at 1.30pm. We ask people to contact their TDs to show the CF community will not stop fighting.
TJ is a citizen of Ireland and people are choosing to give him a life sentence because he is not worth the cost of Orkambi. The price of Orkambi is irrelevant, but it is far less than the pension of a TD.
Simon Harris you have the power to overturn this decision.
Elmarie Tipper is a full-time teacher and a mom to TJ (6) and Anna-Rose (4).
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Solving the climate crisis and emissions is really about making the majority reduce their consumption through using less or paying more taxes so the elite can carry on as normal. If the govt or the world as a whole were serious then we would each have a carbon allowance, but how would that work, far easier to tax the lower income people on fuel for their cars,houses etc than ask the wealthy to stop flying private jets, driving cars that do 20mpg and leave a carbon footprint that’s massive compared to ordinary people.
If the ordinary car is such a threat, why are people being asked to go electric when to do so would either bankrupt them or mean they simply couldn’t afford a car. Its simply not going to happen unless somebody is making a fortune out of it.
@Rex Tilson: absolutely. A survey in the U.K. found that the top 15% of flyers took 70% of flights in that year (2014). Their Carbon costs are even higher because the top 15% fly more long haul and private jets. 50% of people didn’t fly that year but they did fly every second or third year.
Increasing carbon taxes would have little effect in any one year as it would penalise the people taking only 30% of the flights. Most of top 15% are rich enough to continue flying.
A voucher allowing one short haul return per person would massively reduce those flights while not affecting the bottom 85% of flyers who take one or none every year. Maybe corporations can have a few more vouchers. Otherwise – zoom.
At the very least we should ban private jets – are we all in this together or not.
There are chasms between Government words/plans and their actual actions, from health, education, infrastructure, etc decades of incompetence and cronyism.
The climate change advisory council?? Money for old rope for sure isn’t it. Anyway we the people soldier on. Chin up folks.
What’s telling for me, is the amount of rubish that comes outta the journal and all the other outlets singing from the same script. Money most be worth it, won’t last long.
Blah blah blah is right…..Go talk to the Chinese & American’s first
@Christopher Byrne: yep, and then we’ll be fed the same BS that the smallest countries must lead by example first.
according to the ESB data centres use 1/3 of the grids capacity. we bow to america all the time,,,banking crises, housing crises, homelessness, i think they global mind is changing and corporates with larger finances than countries are eventually gonna get reigned in. ofc we are gonna be the last to do it as usual. gombeen politics.
@Mick Heery: I understand that DC’s use a lot, but, do you have a link for the above claim of 1/3rd usage please?
The fact that Ireland has yet to switch to E10 petrol is very telling as to the seriousness of our climate strategy. Literally the lowest hanging fruit, it would remove the emissions equivalent of 100,000 cars off the road practically at the stroke of a pen. If we can’t do something that simple, I’m not sure we’re up to the more serious tasks..
Completely shutting down the import of UK car market totally contradicts govs emission fairytales since local consumer can not get a cleaner – newer car that falls under low co2 regulations from abroad (Since UK is the ONLY AND CLOSEST PLACE where wheel ks right-handed) leaving Irish motorists to use the old diesel engined cars since the car prices are sky high on the island.
The first thing that needs to happen is that people’s attitude needs to change so that they genuinely care and are motivated to make changes to support these goals..
I honestly believe that all the talk in this article will not make people care and threats will only make people do the opposite.
Governments here have a very poor track record on bringing people together as one Nation.
@Roger Bond: people’s attitudes will only change when they see politicians stop squandering billions on every single development they touch.
Start producing results. Not just throwing more taxes at people with no end result visible.
Personally I am more concerned about affording to put fuel in my car, getting appointments at hospital and paying my mortgage.
Regarding climate change I’m inclined to listen to someone who has seen it first hand & that’s David Attenborough, he has said due to climate change & it causing methane gas immissions there’s going to be at least 4/5 viruses per annum!
@Colette Kearns: Sir David frederick attenborough collette. Agree
“Climate Experts” … well. Looking through the history of mankind, the “Climate Experts” helped the society to deal with changes to the climate. They didn’t have computers or smartphones, but an open mind and common sense.
But now that we are in the days of “peoplekind”, our experts are more like the experts of the Aztecs. When the climate changed back in their days, their answer was to kill thousands in order to please their gods, so they’d stop the climate change.
I don’t want to hear another squeak about Planning for more big wind and solar, without first hearing all about the Planning for how they intend filling in the big intermittency gaps. Massive electrolysis plants here or there. Mega grid all over the place.
In reality though all this carbon account game, is just that, a silly game. The only way we will solve this problem is by fighting it as a Warming World War. We need the military industrial combines to stop making weapons and instead make thousands of new generation SMRs. and let the Australians make the fuel for them, instead of exporting vast quantities of coal.
More methane is already boiling out of the permafrost, than from a billion more cows. What the hell are we on about. If we could solve the problem by virtue signalling, it would be solved long ago.
@Nicholas Grubb: I agree…last night on Eirgrids dashboard there was nearly 4000MW of wind available but the grid could only absorb 2000MW so nearly 2000MW of wind power had to be turned off all night but the wind turbine owners still get paid for the curtailment.
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