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Tony Heffernan is the father of three-year-old Liam, who is being treated for Battens disease, and Saoirse, who died from the disease in January aged five. Battens disease is a genetic condition in which the brain gradually degenerates, causing disability and eventually death.
Earlier this year, Tony and his wife Mary took Liam to New York, where the toddler underwent experimental brain surgery to delay the disease’s progress. Here Tony describes their family’s journey.
WE HAD OUR last Christmas with Saoirse last year, and she passed away on January 18. We had no grieving period for Saoirse, because from there then, we were struggling to get Liam onto the treatment trial. The criteria for the trial are exceptionally strict – the candidates have to be over the age of three. So we had to lobby for an exemption, to change the protocol, and we did. And as soon as we got that in April, we were taking him over there to begin treatment on May 3.
When we got to America, Liam went through a fairly intensive few days of screening, to make sure that he was suitable, and to pick the 12 locations in his brain where they were going to administer the treatment. On May 3, they drilled six holes in his brain, while we spent eight hours in the waiting room.
I hear people worry – and they rightly worry – about bringing their children to school for the first time, bringing them to the dentist, bringing them to get their hair cut… Even I worry about bringing Liam for a haircut, because I know he’ll have a tantrum. But I think, at least you can get your hair cut. You’re not in a box. So we didn’t worry about bringing Liam on a long trip. The big thing was making the decision to allow someone else to drill six holes in Liam’s head.
But after watching my daughter die in our arms, and watching her having hundreds of seizures a day, and going through all of that on her own – I couldn’t repeat it. We said we’d do everything in our power. If I thought I could do it myself with a DIY kit, I would do it.
It’s too early to say how successful the operation was. We know there’s a big chance that Liam may not survive, but given the indications so far, he’s astonishing us and professionals. I was just in the chemist this morning, handing back his anti-seizure medication. It’ll be three weeks tomorrow he’s off it, and there’s been no seizure at all yet, though we’ve had a couple of scary moments.
We’ll know more in November, when they’ll look at the internal part of him. At the moment we’re looking at the externals, which are his mobility, his speech, his interaction with kids, his confidence. Liam lost the ability to eat solid food in January this year. He had been a spud, two veg and whatever the dogs are eating as well man. He’d eat all around you. And he lost all that – he lost interest in food completely. Liam had physically lost the gag reflex, which is the protection mechanism to stop you dying, choking. And the consultant told us Liam couldn’t eat solid food any more in January.
In July, two months after the operation, we brought Liam in for a check-up. And the consultant couldn’t believe it. He saw Liam standing up, walking around, interacting, drinking – and then eating Taytos. He just could not believe it. And the doctor did the gag reflex test, and it’s back. He has it. So that gives us great hope. The next marker for Liam is the six-month check up. That’s the big one.
I went back to work three weeks ago. It’s very difficult, but it had to be done – financially, I have no choice. I didn’t work from March 2010 until the end of this July. I wasn’t signed on the dole and getting welfare payments, or using charity money to survive. We had a little nest egg which helped us through. I work in Oslo, as a ship’s captain. The company I work for are very sensitive to the situation. They held a position open for me, and I just told them, I’ll try my best and I’ll do as much as I can. And I told Mary the same.
There are a lot of things you lose by being away. You lose all connection with the family, though we use Skype, and lots of phone calls. But there’s just no choice. There’s no job in Ireland for me. And my wife understands. She doesn’t want me to leave, of course. She’s going to be left with Liam, and she’s going to be on high alert. But if anything goes wrong I’ll come home again.
I would love to see Liam thrive and survive. That’s what we wish for. I don’t care if we live in a caravan or a cardboard box; I don’t care. As long as the three of us survive, that’s all I want.
You can make a donation to Bee For Battens, the charity set up by Tony and Mary Heffernan to raise awareness and support children with Battens disease, via their website.
Follow the charity on Twitter @BeeForBattens, and on Facebook.
Bee For Battens are currently running a fundraising initiative with interior design site InteriorsDirectory.com. For every person who registers for a free account and refers a friend, the site will donate €1 to Bee For Battens.
Bee For Battens also have a YouTube movie about the life of Saoirse Heffernan, which can be viewed here. Interview as told to Michael Freeman.
Not nearly as challenging as it will be to keep FG seats in an Irish general election.
@Mike 100: Housing is the biggest issue they ignored for years along with their colleagues in FF yet they think they can brazen out the anger of the people?
Any worker in this country who gets up early everyday in order to pay for their high cost of living expenses who have children must despise FFG for how they’ve robbed them of the chance of ever owning a home.
@Mike 100: ” Hobsons choice”
@Mr Inbetween: head for the clonea hotel lovely spot last Friday night,Irish can head for Australia or US for housing just one thing have 5000 in you’re account and you’ll have to get a job straight away
A party that has lost touch with the Irish people.Time to get off the gravy train.
@Willie Marty: Never thought I’d say you were right about something Willie yet here we are! How strange this life eh?
God almighty
Regina Doherty…f.g have no talent in the wings at all
@David Cotter: Is that the ‘mandatory but not compulsory’ wan?
@ItWasLikeThatWhenIGotHere: Moved her constituency office to Skerries after the general public sacked her in 2020 , this one has no shame after the very bad decisions she made when minister, Seetec comes to mind always.
@David Cotter: Yes they have. Isn’t Leo floating around the states like a little fairy with a magic wand. What an excuse for a politician. What an excuse Fine Gael and cohorts Fianna Fail are for the political leadership of the state.
Sometimes, a lot of the time the Irish public are their own worst enemies.
For people who don’t have houses – it’s all about housing. FG have been in government since 2011, so it’s way too lame to blame anyone else for their housing mess. You can only distract people for so long with woke notions, but a massive 94% of apartments built in Dublin over the past year were bought directly or indirectly by government bodies for social & affordable housing or else was bought by institutions with much of it rented to government bodies for social housing.
So, you can see how the needs of ordinary workers are completely ignored, and they are treated like tax drones to fund government pet projects and illegal immigration.
If I was a gambling man, I wouldn’t be putting any money on Regina-of-the-Nine-Genders getting elected!
Bring on election.hope you stay in usa leo . Dont give a hoot about middle and lower class irish people . People struggling to survive enjoy your lovely break away deserve it
Well done Leo,
Sure we can wait until early May for a few hard answers at home.
Do not forget the Auld Referendum.
Some hard questions at home when you are working so hard for us all abroad.
Happy St. Patricks Day.
Some basics Questions not adding up in Ireland.
Dail 99% Y/Y
People 70 % + N/N
Interesting Maths.
D’ont get it, Please Explain.
@Tran Send: I don’t get your comment
Fine Gael forgot about the working Irish man & woman who get up every day, go to work & pay their taxes. Instead they concentrated on woke policies, NGO’s, Hate Speech legislation & illegal immigrants. They forgot about the bread & butter policies affecting Irish taxpayers & hence since 2011, our kids will never be able to afford or even get a home, pay exorbitant rent or live in their childhood bedrooms, access a broken Health service, limited GP access, schools at bursting point, the most expensive energy bills, insurance, healthcare, groceries in Europe & end up paying taxes on everything & living month to month. Don’t listen to the polls as they aren’t going to reflect the hiding your going to get, FG heading for Labour territory. Varadkar & FG sold out Irish workers.
@SV3tN8M4: Great comment. Be surprised if the wokenal.ie don’t delete my comment.
Be delighted not to ever vote FG again…
Times will be even more challenging if you keep making statements like what you have just done in Boston Leo. Implying that irish people are some kind of rampant right wing racists is not going to cover up your government’s incompetence,
Health
Housing
Policing
Education
These are just some of the things that you cannot manage properly for the 5 million people approximately who live here already and you want to bring more people into this mess?
Do your job Leo support Irish people first.
@cn360lf isthebest: doesn’t he know that this stuff gets reported on back home in little auld Ireland
Cloud cookooland!
Political classes worldwide are not listening to the people. They are more interested in Economic principles of growth, no matter what the cost is to the general population.
Grow, income
Grow market
Grow margin, for these massive companies.
Their services are becoming progressively worse. Their profit are rising rapidly.
Small indigenous businesses are measured and compliance set at the same rate for these massive corporations.
You now need to manage your Cafe, Shop or small businesses as if you are a multi national corporation with a team of Accountants, Lawyers, professional staff ready for the next set of challenges the Government dream up.
Small businesses will disappear, leaving the market open to nothing but these Gigantic companies, that are already fleecing the public.
Maybe that is the strategy. It’s definitely working as businesses are going bust at the rate of knots.
@Max Cooper: so true a few successful foreign tech companies is not a good measure of a successful economy. It may well prove a total disaster if circumstances change and our sweetheart tax deals and transfer pricing are no longer enough to keep them here.
Hopefully this is death by 1000 cuts for you,Varadkarl.Your distain for the Irish people and their concerns is truly sickening.Hopefully we don’t see such a repulsive person as a FG leader again.
@Gerry Lamont: Better still, let’s hope we never see Fine Gael again. They have no contact with the electorate.
The audacity of Viruka. Raises blood pressure either every statement. Championing illegal migrants coming to sponge off of Irish taxpayers comparing them to Irish fleeing famine who had to work to death to survive with not a penny handed to them.
Fine Gael are screwed come the elections
Saying in the US that saint patrick too was an undocumented male immigrant. Talk about tone deaf. Clown
@anthony murphy: The custom’s were very poor in 432ad according to Annals of the Four Master’s.
Did Leo have a lobotomy? Well it wasn’t a success?
@anthony murphy: at least he got rid of the snakes, but somehow it seems they managed to sneak back in
I’m no FG voter and have plenty of criticism to throw at them, but a functioning centre right is important for any functioning state. We’re witnessing a rise in populist parties in Europe, particularly on the right. It is not even their policies that concern me the most. In the end most of their policies are unimplementable, which populist parties in e.g. Italy and The Netherlands are discovering. It is the complete ineptitude to run a government, utter lack of basic knowledge about statecraft and their slash and burn approach to state institutions that concern me the most. This is the damage that will take the longest to undo. Many think that the likes of FG are incompetent. Wait till a populist version to the right of these guys come into power. Then you’ll see what incompetence looks like.
@Name not provided: I agree that SF would be worse than FG
@Name not provided: Take a look at what happening in Argentina now.
The ‘Anti-wokes’ got in.
It only been a short while but, boy, what a disaster already.
@Name not provided: When you cant, as a governing party for a decade, implement policies that address/impact the housing/ homeless crisis.. but in fact oversee an escalation of both.. nor address a health system that has billions upon billions thrown at it year after year .. its time to pack yer bags. Statecraft.. ? are you fckn high.. !
@Name not provided: You had me at “FG are incompetent”. Good man, yourself! Great to see Irish people copping on at last.
@ItWasLikeThatWhenIGotHere: Argentina’s sovereign debt has been rising for decades due Government spending and borrowing.
Their inflation has risen to unprecedented and unsustainable levels because of this.Milei is the first president in decades to address this and is trying to do something about it to bring it under control.He has shut down their version of RTE.
Maybe his policies will work,too early to say,but it couldn’t keep going.
Don’t know where you’ve got your description of disaster from.
@Thomas Sheridan: Cannot be worse than what we have. Give them a chance? If they are not up to the job get them out!
The only way to change the political ideology is to clean house from toe to tip, and form a new party for the people.
@martin lawlor: Milei has – so far – made the situation much worse.
@ItWasLikeThatWhenIGotHere: How????
@Brian: Couldn’t agree more.
Don’t just focus in on FG. If anybody gives a vote to FF, SF, Green or Labour at the next General Election we are utterly done for. They are anti Irish globalists intent on eroding our Irish culture to appease the EU and their globalist masters.
Please consider Aontú and the several great independent TDs out there. Time to do our homework. If we give them the kicking they deserve they will have to listen to the Irish people.
@gary oconnor: Aontu are religious nut jobs, so I won’t be considering them Their backwardness is not a solution to anything
@gary oconnor: Two aspirin and back to sleep lad.
@gary oconnor: Agree totally, the mainstream parties in Coalition & in Opposition don’t represent the Irish people any longer. Not sure that the State is going to survive as is, as so much damage & societal division has been done. We will have to start from scratch again, 100 years on, it will be messy but it’s inevitable the way things are progressing, especially when you think the next likely Govt will be Fianna Fail & Sinn Fein & either Social Democrats or what’s left of the Greens, as a mudguard. None of those parties have the Irish workers interests at heart, unless people get change fast, it’s going to get nasty. No hope of Varadkar changing, when you see him comparing the myths around St. Patrick to a modern day immigration crisis. His speech was as bad as Roderic’s worldwide tweet.
@gary oconnor: looking at the current Dail, Aontu would appear to be the best of a bad lot. I wouldn’t agree with them on everything but they are certainly better than any of the others as was clearly shown in the recent referendums.
@Fidgenti: better than ideological nut jobs.
I honestly wonder if Leo himself considers he’s doing the job right, if not why not? So I went looking obviously to see why it is we get such poor leadership worldwide, this is the most enlightening answer I could find; https://youtu.be/W_Oab42VZRE
Any seat
Well varadkar chickens coming home to roost’ but people need to think again s Fein not the answer.
Where has Chief SF Shill Corrigan gone?
@Sun Rise: Political classes worldwide are not listening to the people. They are more interested in Economic principles of growth, no matter what the cost is to the general population.
Grow, income
Grow market
Grow margin, for these massive companies.
Their services are becoming progressively worse. Their profit are rising rapidly.
Small indigenous businesses are measured and compliance set at the same rate for these massive corporations.
You now need to manage your Cafe, Shop or small businesses as if you are a multi national corporation with a team of Accountants, Lawyers, professional staff ready for the next set of challenges the Government dream up.
Small businesses will disappear, leaving the market open to nothing but these Gigantic companies, that are already fleecing the public.
Maybe that is the strategy. It’s definitely working as businesses are going bust at the rate of knots.
Haiti – another eloh tihs (written backwards) country.
Information released under the FOI after the voting shows that the Government was advised to “avoid a concrete and mandatory obligation to provide support “ for carers into the Constitution. The information can be seen in an article on Gript who submitted the FOI request. Why is this important information not being picked up by other media outlets?
Why do we get such poor leadership in general worldwide I wondered, so I went looking as you do and the best answer I found was this; https://youtu.be/W_Oab42VZRE
ROLL on NOVEMBER
The referendums (referenda) were the smoke and mirrors to provide a win for the FF-FG.
That combo, was the only workable Dail majority. We can thank ourselves for that. It was FF-FG or Mary Lou and rag-bag of lefties.
I would still vote FF-FG rather than Mary Lou agus a cairde. Better the devil you know etc …
Leo has to go and the sooner the better. He has allowed the halo effect of gender preference to go to his head. Add in ROG who is of a similar disposition and the country is in a quare state. They both give the impression that they are looking for cosy numbers in the EU or the UN or the other super-national agencies.
The days of rainbow flags and street markings are over.
@Antony Stack:
From the man who says Welcome to 50,000 per year for the next 10 years.
ROG Thesis available on Trinity college website
http://www.tara.tcd.ie/handle/2262/78147
Abstract:
This thesis seeks to examine whether Union citizenship (EU) protects social rights to the extent necessary for it to be legitimately be described as ‘citizenship’.
The research methodology is primarily a doctrinal one and places a strong emphasis on the analysis of primary materials such as case law, the Union treaties and secondary legislation, as well as relevant white papers, reports and policy documents.
The thesis begins describing the Marshallian concept of citizenship, which is the basis for the definition of citizenship employed, and then outlines the role that social rights play within this model.
Social rights are defined as covering two distinct areas: individual social entitlements protected in legislation and social rights values, which are protected within constitutions. It is argued that both are necessary for a legitimate model of citizenship.
Best news today.
@fidgenti neither are the shinners as well noe see, just as bad as the rest of them!
@Liam o Connor: What language or script are you writing?
@ Martin O,Reilly
“What language or script are you writing?”
From the thing who can’t even use an apostrophe for his surname.
You would give Roy Dowling a run for his money. And that’s saying something.
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