‘I have hard days, days here crying over him for hours’

He was diagnosed with refractory epileptic encephalopathy but only in February of this year was the cause discovered – a gene mutation known as ARX. James sleeps in a large specialised cot in the small kitchen/sittingroom of his mother’s house. His mother, Kerrie, sleeps on the couch in the same room and her daughter Phoebe (11) sleeps upstairs.

James is a beautiful little boy.

He is very disabled. He has, in recent months, lost his sight. As well as experiencing frequent seizures he suffers from a condition called dystonia, which causes his muscles to contract uncontrollably and painfully for minutes at a time. "It's heart wrenching," says Anne Reilly, the children's liaison nurse with the Jack and Jill Foundation. "His whole body goes [stiff] and his back arches. He gets himself into really funny angles and he can't release that. We would know ways of bending the joints to stop it and we can't do it with this child."

“There’s no calming him down or easing him,” says Kerrie.

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Jack and Jill nurse Naomi Jackson, who lives 40 minutes away, is cradling James in her lap. "I call her the baby whisperer," says Kerrie. "He was screaming earlier but, as soon as Naomi came in, he's been completely settled."

At first, Naomi’s help was required purely to assist with feeding. Before James was fitted with a “peg”, which allowed tube feeding, it would take hours to feed him because food would just pool in his mouth. But she soon became a source of emotional support for Kerrie. “We were just saying that friendships evolve over months and years, but our friendship clicked in the first week,” says Naomi. “I’m not just here looking after James . . . she can call with questions. I can give a bit of advice . . . We can talk about anything, not just James. How Phoebe is doing, how the summer holidays are going.”

It’s difficult to have a normal life now, says Kerrie. James has moved from being spoon fed to being fed directly by tube into his duodenum. He is given medication throughout the day, starting at seven in the morning. Kerrie has a notebook detailing his food and medicine intake. James cries out. “It just breaks my heart. There’s nothing you can do for him.”

‘’In despair’

“I’ve turned up and Kerrie’s been in despair and just needs a hug,” says Naomi. “I can’t solve everything while I’m here but I try and make it a little bit easier.”

A lot of Naomi’s help allows Kerrie to go spend some time with Phoebe. “It’s very tough on her,” says Kerrie. “She’s going through a lot herself. And because James is taking up all of my time, she does so much to get my attention. And she’s so helpful. She tries so hard to calm him. She rubs his legs and talks and signs to him, ‘It’s okay, James.’ And he still doesn’t calm and I say, ‘It’s okay, Phoebe, he’s trying his best.’ Even before she went to school this morning she says, ‘Will you be okay, mam?’ and I said ‘What do you mean?’ and she says ‘When I’m in school I worry, mam, because you’re on your own and you don’t have me to help you.’ And I say, ‘But Naomi’s coming today’ and she says ‘Oh that’s fine so’.”

At first it was very scary

How did she feel the first time she left James alone with Naomi? “At first it was very scary,” says Kerrie. “I was texting to see if he was okay.”

“Now, I don’t hear from her,” says Naomi. They laugh. “That’s not true.”

How is Kerrie doing now? “I have hard days, days here crying over him for hours. And then I say: ‘Come on now, stop being so silly, cop on to yourself.’ It breaks my heart to see him in pain.”

“There have been times I’ve seen her down and I don’t know whether to say anything,” says Naomi. “You can’t just keep saying, ‘Are you alright, Kerrie?’ I remember once when he was going into hospital and I was here and I walked by her room and saw her curled up on the bed.”

“I was just so tired,” says Kerrie. “I don’t know where I’d be without Naomi . . . She brings so much warmth and so much happiness to the house.”

How has it all affected Kerrie? “I’m much quieter than I used to be,” she says. “I used to be bubblier.”

What does James like?

“He loves music,” says Kerrie. “And he likes red lights. He can perceive a bit of red. He loves his cuddles at times but when he’s like this it’s very hard to comfort him.”

James cries out again. “Can you hear how hoarse he is from crying?”

Suitable accommodation

Kerrie’s house isn’t ideal for a child with James’s needs. The kitchen/sittingroom is the only room that is large enough for James’s cot and bringing him upstairs to the shower is difficult. Enable Ireland and local politicians have written to the council asking for more suitable accommodation, but they say there is nothing available. And James doesn’t always get what he needs when he needs it. A special pushchair arrived, but they waited months to get a canopy and a rain cover. They had a similarly long wait for a shower seat.

James's condition has disimproved in recent months and he is now in receipt of specialised palliative care. Kerrie would like people to know about James, to help highlight the Jack and Jill Foundation who have helped them so much. Kerrie is remarkable, Anne tells me.

“It’s a very special love these kids need.”

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