11-year-old Liam Reading has spinal muscular atrophy – a disease he battles with every day. To help ease the difficulties it causes, he’s been under the knife repeatedly. It’s no fun, so Satan’s Little Helper stepped in to help bring some much-needed joy, happiness and laughter into his life.
Liam is waiting for his third major surgery. It’s a nervous wait, because he knows what will be done to him – and because he knows how much the recovery sucks.
“He’s getting steel rods put into his back,” explains his mum, Stacey. “He’s terrified and he doesn’t want it.”
Unfortunately for Liam, he needs it. The operation is required to help straighten his spine and fight off the effects of spinal muscular atrophy (SMA), a rare degenerative disease that progressively destroys motor neurons – the nerves that control activity like speaking, walking, breathing and swallowing.
Much needed, not wanted
Liam needs the op because his SMA has resulted in scoliosis – curvature of the spine. This also makes it hard for him to breathe, as his chest is compressed. His surgery is designed to straighten the spine and make it easier for his lungs to take in oxygen.
“It’s such an invasive surgery,” says Stacey. “From what I understand, he’ll get one rod implanted on either side of his spine and fused in place, so it can’t move.”
His two other operations weren’t a walk in the park, either.
“He had his tonsils and adenoids removed to help him breathe better, but he still needs to sleep attached to a VPAP machine that helps open his lungs more.”
Liam has also had a feeding tube inserted into his stomach.
“His muscle deterioration meant that it was getting harder for him to chew and swallow, so he wasn’t eating enough and couldn’t maintain a healthy weight.”
The tube means Stacey can feed him, even when he’s sick, and it’s taken the stress out of giving him medicine. As Stacey says “there’s no fighting and he doesn’t have to taste it! It’s a small silver lining.”
Fun times
When Satan’s Little Helper heard about everything Liam has been through, and has to still go through, we knew we had to help him out.
He spends a lot of time in hospital – something as innocuous as a cold can put him there – so Satan’s Little Helper wanted to give him something to occupy the time. A care package of LEGO, a colouring book and the latest Crash Bandicoot PS4 game were swiftly dispatched.
“He was so excited when the package arrived,” says Stacey. “He’s already done the LEGO – it’s in pride of place in front of the TV.
“The colouring book came in handy when he was in hospital, as he and his sister were able to sit on the bed and do it together.”
Liam’s muscles don’t work like his other friends’ do – he uses a powerchair to get around – so being able to do things that puts him on a level playing field is so important. And that’s exactly what he gets from Crash Bandicoot, which proved that laughter can be the best medicine.
“He was still sick and his best friend came over to keep him company. They started playing Crash Bandicoot and the giggling I heard from his room was so loud I had to close the door.
Lots of laughs
“It was an amazing moment. Just hearing him laugh again was precious and he’s got a funny laugh, a proper belly laugh, which cracks me up every time I hear it.
“I haven’t heard him laugh for so long; it really brought tears to my eyes.”
There’s also been more good news for Stacey and Liam.
“We’ve been fighting for years to get an SMA treatment funded by Pharmac – we’ve marched on Parliament and everything – and in September we finally got message that it had been approved!”
Cue smiles, laughs and relief all round!
Comments