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.

‘That gives us great hope’

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.