HAPPY FAMILY Lorraine and Paul Mearns with their sons Cillian and Rían at their home in Shrule. Cillian has Spinal Muscular Atrophy but his family are determined to help him live as normal a life as possible. Pic: Rebecca Reilly
There are a number of milestones in a person’s life – graduation, meeting your soul mate, your first promotion, your child’s first steps.
You expect these moments to be marked with laughter, joy and hope, not to be earmarks of concern, worry or doubt.
For Paul and Lorraine Mearns, these moments do indeed indicate the best days of their lives, but, like so many couples raising a child with Spinal Muscular Atrophy (SMA), many of these milestones are peppered with apprehension.
Cillian Mearns was born on a crisp January day in 2012 to two doting parents. He was everything they had hoped for and more, a strong baby boy with a head full of wild dark curls and his father’s deep chocolate eyes. Although there were some complications, mother and baby were happy, healthy and full of life.
“Isn’t he big?” “He’ll be tall like his father.” “Maybe he’ll play rugby someday” – a daily list of hopeful comments Cillian received.
“He was our first child, so we didn’t really know what to look for; when he should have been rolling, sitting, standing etc. It was my mother, Mary, who first noticed he wasn’t pulling himself up in the cot, which, I know now, is a tell-tale sign of SMA,” Lorraine, formerly Cawley, and a native of Dalgan Road, Shrule, explains.
As time progressed, Lorraine and Paul, an adopted Shrule man, having grown up in Belfast, noticed increasing differences between Cillian and his friends.
“They were running up and down the stairs, whereas Cillian couldn’t take a step. He’d sit on the floor playing with his toys, while they would be sprinting from room to room,” Lorraine recalls. While friends and family reassured them that all kids progress at different rates, after Cillian’s second birthday they knew they had to seek outside help.
“He’s fine, he’s just lazy,” were the words echoing through every medical office Cillian was brought to. Orthopaedic surgeons, physiotherapists, paediatricians ran series of tests – physical, blood, you name it. They all shared the same opinion.
“I was in Ballinrobe for a meeting one evening, and I saw a poster for a little girl, Grace O’Malley, who also has SMA,” Lorraine recalls vividly.
“Her mind is fine, but her little legs don’t work,” was the explanation given to her when she enquired about the youngster’s condition. Immediately, and begrudgingly, she knew.
“I couldn’t face ringing the paediatrician myself and asked Paul to make the call. He came home early from work the following day, the worry and heartbreak was written all over his face. We immediately broke down. We still thank God my mother was there that day, she was unbelievably strong,” she states with a look of both admiration and relief in her emerald green eyes.
Despite the crushing blow the family had just received, they knew they had to kick-start into preparation mode – preparation not only for the following months, but the rest of their lives. That’s their reality now.
Spinal Muscular Atrophy, for those of us who have never heard of the disorder, is a muscle wasting disease. Type 2, what Cillian is living with, is one of the most severe variations of the condition. Cillian was just two years old when he began using a walking aid. Initially he was diagnosed with Type 3, which is notably less caustic, and was standing aided for short periods of time.
When he fell from his walker and broke his two front teeth not long after his diagnosis, experts came to the conclusion that he resided in the Type 2 category. Soon Cillian was in a manual wheelchair, but began to lose power in the upper half of his body. A powered wheelchair became a necessity – he cannot stand at all now, and doesn’t have the power to wheel himself over the saddle of a door even.
With this disorder comes a lot of necessary dwelling modifications. Basic needs such as access to light switches, taps, bathroom use, everyday things we take for granted, need careful consideration when you have a child with a condition like SMA.
The family have been left with no alternative but to build a new, universally accessible house. Altering their current residence is not an option, and neither is selling – the present economy would leave the couple in negative equity.
Despite the current hardships they’ve faced, Paul and Lorraine remain positive. Footsteps Preschool in Shrule, where Cillian joins his classmates every day, has really been a blessing. “It’s amazing the way the kids don’t notice there’s anything different about Cillian,” says Paul with a smile of relief. “They’re an example for us all really.”
Cillian needs full assistance with everyday tasks such as going to the bathroom and activities with his classmates, Edel and Corina, and Cillian’s two assistants – Helen and Mary – who were provided by Enable Ireland, have been a vital component in Cillian leading a normal life.
“He’s a very independent wee man,” Lorraine beams with pride. “He loves his tractors, and bless Paul’s workmates who modified a toy tractor to allow him to drive it. Rather than having to use his foot – which he wouldn’t be able for, he can gently control it with his hands. It allows for that freedom that he craves and that we want to give him.”
The couple focus now on getting the house ready. A hoist to enable Cillian to get in and out of bed, a wet room, even-level tarmac so he can bring his wheelchair outside, are all costly essentials. Their family and friends have all come together and this Saturday, April 16 are hosting two events. The first, an SMA Awareness Wheelathon in Rinville Park, Oranmore. Starting at 12 midday until 3pm, it promises to be a great day for kids with face painting, arts and crafts and popular cartoon characters even making appearances. It’s a free event and everyone is encouraged to arrive to the event on wheels – wheelchairs, bikes, trikes, scooters – the aim is to make the day wheelchair friendly!
The evening offers a more adult affair with live entertainment, food and a raffle in Gibbons’ Bar, Shrule at 8pm. Tickets for the event are available at local businesses throughout Shrule, Kilmaine, Ballinrobe, Headford and the surrounding areas.
“Our families and friends have been such a huge help. My family are so close, and Paul’s travel down regularly from Belfast – we’d be lost without them. We have to remember that we still have to raise our kids in a happy home. We take each day as it comes,” Lorraine says, faithfully.
“The day Rían pulled himself up in the cot was one of the best days of our lives, it is hard not to think about the future when you have to plan it, but it’s important not to scare yourself witless,” adds Lorraine.
“Going forward we just hope Cillian can live as happily and independently as possible, and we’re going to do everything to make that happen,” Paul states, as he gently gives a hopeful look to his wife sitting opposite him.
MORE Anyone looking to donate to the fund can do so via the following link: www.idonate.ie/caring4cillian