To say Maura McCrystal is a busy mum is like saying the sun is warm. It just doesn't really do justice to the reality. 

She and her husband Ronan work tirelessly to raise five growing boys – John, 17; Ryan, 16; Shane, 15, Ronan, 12 and the little man, Jack, who is 5. The amount of washing, cleaning, feeding and shopping it must take to run her house is frightening. 

Climbing daily mountains of laundry and dishes is a gargantuan challenge, one that might ruin a mere mortal, but what makes it even more remarkable is that Maura copes with the extra challenges that come with her youngest son's medical condition.

It’s a condition that doctors haven’t identified yet, but little Jack doesn’t stand, walk, or speak. He has severe scoliosis, wears a body cast, has contractures of the hands and feet, and is completely tube-fed.

“He was quite poorly when he was born,” Maura told us, “and the doctors didn’t expect him to survive.”

“They said he wouldn’t sit or stand or anything like that. They didn’t actually know, because Jack is undiagnosed and they couldn’t tell if he’d be able to do anything.”

Undiagnosed

A condition so severe would be hard enough for Maura and Ronan to deal with, but as Jack’s is unidentified it’s impossible to know how the condition should be treated and managed long-term, and that uncertainty must be tortuous. She might never say it herself, but something in Maura’s voice tells you she’s not about to crumble under the strain, she’s made of stern stuff. You probably can’t raise five boys without learning to be tough.

“We don’t know what’s going to happen in the future, we don’t know what the prognosis is, whether Jack will ever be able to walk or talk or feed normally." Maura said. "But you don’t get too hooked up on it because you’re just living each day-to-day. A diagnosis would be lovely, yes, I think more for his brothers, so they will know what to say and do in the future.”

Nobody can tell Maura and Ronan what Jack’s potential for development might be, even if they had a definitive diagnosis it would be no more than an educated guess. But recently he has been making progress. Jack has been using the Upsee for a while now, and Maura has been delighted with his progress.

“The difference in him is like day and night. With his standing, he used to flop at the knees but his knees are now nice and straight, he’s standing up taller and his legs have gotten stronger using the Upsee. He had to get a larger size in the harness and it can take two people to get him into the Upsee because of the body cast, but it doesn’t prevent us using it all.”

“The physio said his most recent session had been his best ever and she had seen a big change in him. She sees him every week and notices him standing taller and pushing through his knees, and she says it’s definitely the Upsee encouraging that.”

Family Participation

Research continues into the Upsee’s long-term therapeutic benefits, and while no results can be published yet, the signs are promising. In the short-term though, what really matters to Jack and his family is that the Upsee lets him get involved with everything he wants. And with Jack, everything means everything.

“He’s pointing now, where he wants to go, and he’s choosing things and having more interaction with his brothers” Maura said. “He likes being out playing football, going to the beach and fishing in the rock pools, walking the dog with his daddy and just being out in our street – he just keeps pointing!”

“The fact that he is out of the chair and up on his feet, we never ever thought we would see that day. It’s very overwhelming seeing him in the Upsee, to be honest. Seeing him doing the different activities he wants to do. We are definitely expecting him to keep making progress, because he loves it so much he doesn’t realise he’s doing physio, which is the beauty of it.”

Maura’s voice has changed. I’m speaking to her over the phone but I can tell she’s smiling.

“You’re walking down the street and you’re as proud as punch." she says. "I don’t know, I still get very overwhelmed when Jack’s in the Upsee. My eyes still well up and it’s like “look at me, I’m walking with my son.” Even when he’s out with the boys, I think “my god, just look at them”.

“It has definitely changed Jack’s relationship with the boys. You can actually see how proud they are of him. There’s more interaction, which is important for them as well, because Jack was so poorly when he was born and they didn’t get that chance to interact with him, so I thought they would never have that real close bond, but no, this has opened up a whole new world to them as well.”

Nobody can say yet how far Jack will develop in the future, it’s still an unknown for the doctors as much as the McCrystals, but surrounded by a family like his, you can be sure Jack will get all the support and love he needs to reach whatever his potential may be.

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