Tommy Meenehen was born on 26 March 2010 and, for the first six months of his life, nobody had any reason to suspect he wasn’t your average bouncing baby boy.

But six months in, “he wasn’t smiling and chirping at us, and he wasn’t looking at us as much or recognising us, or the funny things he used do or the chatting”, explains his grandmother Marie Tierney.

It went downhill from there, as his mother Mel (short for Michelle) noticed “he was doing this thing with his arms”.

His arms would “just kind of fly out – he’d stiffen up and his arms would just – like he could be fine and all of a sudden his arms would just fly out and go like this. They were infantile spasms”.

At his eight-month check-up, the public health nurse noticed he still wasn’t sitting up, he still wasn’t chewing, he wasn’t doing all these things that he should be doing.

Then one evening “he was sitting here on the couch and he done it”, says Michelle. “He’d do it and stop and do it and stop – and he got nearly breathless between each one,” she says about the spasms.

It went on for about 20 minutes, so they brought Tommy to the doctor and then to Crumlin,where he had another infantile spasm. They decided he had a metabolic disorder, and Tommy stayed in hospital for two weeks. It took many scans to find out which of the thousands of metabolic disorders it was.

The day before St Patrick’s Day, they finally had their answer: Tommy had Leigh’s disease. This is a rare condition, which causes neurogenic muscle weakness, unsteadiness, brain changes, spasticity, and sometimes heart problems.

About 75% of children with Leigh’s disease die by the age of two to three years old. In addition, there can be difficulties with hearing, seizures, and heart problems.

“We all started crying and everything,” says Michelle.

“She never said [it] to me, but Mammy and Daddy were told out in the hall that she didn’t even think Tommy would get out of the hospital, he was that sick.”

Mel was told, depending on “how well he is minded”, he might only live to six or seven years old.

That was six years ago.

“And that was even if he got out of hospital at all, because they weren’t expecting him to get out of the hospital in the first place,” explains Mel.

shock

However, one of the most shocking discoveries for the family was finding out where Tommy’s Leigh’s disease came from. It turns out that Michelle has Leigh’s disease herself. And she doesn’t just carry it, she has about 75% of it.

Michelle knows a girl who has about 74% of it and is extremely debilitated. “She can’t sit up. She can’t do anything like that,” she explains. Tommy has about 98% of Leigh’s disease. Yet Michelle has led a perfectly normal healthy life so far. Apart from Tommy, Michelle is the only member of her family who has Leigh’s disease, so it’s suspected the disease skipped a generation and comes from a grandparent.

caring

Caring for Tommy is a full-time job and Michelle is his full-time carer. Tommy is never left on his own – not even when he’s sleeping at night. Granny Marie explains: “You couldn’t do that to Tommy. That wouldn’t work at all. Sure, he wouldn’t be here at all if you were to do that. The only reason Tommy is good is because he’s minded all the time.”

Mel explains that even coughing is dangerous for him: “Tommy is on medicine for saliva in his mouth. He could choke on saliva in his mouth very quick.” Tommy used to love dinners and food, but his swallow went –and he’s now on a peg feed four times a day. He’s on six medications morning and night – six different types twice a day and is on an antibiotic three times a week to keep him well.

Mel is often afraid to send Tommy to school, because “I know myself if Tommy gets a bad enough viral infection or bug he could die from it, so that’s why I’m afraid to send him to school sometimes”.

Despite all this, Michelle says Tommy is very easy to mind. “He doesn’t cry, he doesn’t do anything like that, if you’re sitting with Tommy and playing with him and stuff like that, or he has his cartoons or he just knows there’s someone there, he’s happy.”

Michelle can’t leave Tommy with just anybody. In fact, the only people apart from herself who can mind him properly are her mother Marie and her boyfriend Neddy.

support

Michelle and Marie are quick to praise the Government and the health service for the help they have received thus far with Tommy. Michelle says if she didn’t have a medical card for Tommy it would probably cost €1,200 a month for his medication – and that’s not including his syringes and tubes.

They also say Tommy is extremely well minded when he goes to Portlaoise Hospital. Marie says: “They’ve gotten to know him … they’re very caring about him. They see him and they go: ‘Oh, there’s Tommy.’”

Another organisation that has been very good to Tommy and Michelle is LauraLynn. “They’ve offered us weeks, or if I ever wanted to go away they’ve offered us a week of respite up there. Tommy can go up and stay there and they’ll take care of him,” says Michelle.

Tommy did it twice and didn’t settle, so Mel hasn’t sent him back, but she says that home care was a great help. This has seen LauraLynn nurses come out to Michelle’s house for four or five hours at time. They do all his pictures; all his painting; play ball with him; read to him; and do story time,” says Marie.

“They bring the massage mat; they play all the different music they have for him; they make all the Christmas decorations; do his Easter baking…or even sometimes they’d literally just sit down with him – if it was only for 10 minutes on the couch – and just sit with him.”

Marie explains that “if you sat on a couch all day long with Tommy, that’s all he wants”.

There is no doubt Tommy is one of the happiest children Irish Country Living has ever met. And there is no doubt this – along with the fact he is doing so well, despite being so sick – is down to the first-class care he is receiving from his minders.

His granny concludes: “If you want to mind him and keep him, as long as you have that person, you have to look after them that way, other than that he won’t be here.” CL

>> Support LauraLynn Children’s Hospice

Children’s Hospice Week takes place from 22 to 28 May 2017. It focuses on seriously ill children and their families, cared for by LauraLynn, a charity and Ireland’s only Children’s Hospice. LauraLynn cares for families from all over Ireland, providing symptom management, planned short breaks, emergency and end-of-life care, as well as family supports and bereavement care to children with life-limiting conditions within the context of their family unit. LauraLynn’s care can be delivered in their hospice, at hospital, in the community or in the family home, depending on the child and family’s preference. While LauraLynn receives some statutory funding, €3.5m must be generated through donations every year.