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Help! I can't breathe...

The answerphone held a terrible message...


Published by: Laura Hinton
Published on: 23 February 2012

Dear Gavin,
There are no words to describe how painful it is to be told your child won't live long. But to hear that twice? It's just utterly heartbreaking.
That's what me and your dad Gary, 65, had to face when you and your brother Sean were diagnosed with muscular dystrophy, the muscle weakness disorder.
Sean developed it first. ‘He might not make it to his teens,' the doctor had gently told us.
‘But he's only six,' I'd cried, heartbroken. If I'd thought my pain couldn't get any worse, I was wrong. A year later, when you were the same age, we were told you had it, as well.
Luckily, we had your older sisters Jackie and Joanne, who were perfectly healthy.
They helped us realise we had to remain determined. We couldn't let this death sentence hang over you. We wanted you to grow up believing you could do anything.
‘Whatever happens, they'll make the most of their time,' your dad would tell me.
And he was right. Remember how we'd take you to the beach every summer? While Sean sunbathed, you'd be up kicking sand all over him!
You were always the naughty one, doing wheelies in the sand with your wheelchair. Then you'd make him push you into the sea so you could feel the cool water beneath your toes. You didn't know it, but poor Sean would fret that your wheels would rust! He looked out for you more than you realised, Gavin.
As you got older, the two of you still wouldn't let anything get in your way. ‘You'll never get in that shop with your wheelchair,' I frowned at him.
‘Yes I will, Mum,' you laughed at me, puffing up your chest.
‘They can move for us!' Sean giggled. Even if we had to jiggle about all the displays in the store, you'd manage to do it!
Me and Dad didn't say it enough, but we were so proud of you both. You attended a school for the disabled, then both got good jobs in a hospital and call centre, and lived in a care home together. Nothing held you back.
Then Sean died - and everything turned on its head as reality hit. You'd lost your best friend. ‘He was only 30,' you cried. ‘I don't know how I'll cope without him.' Together, that's how we'd cope.
There was something important we learnt from your brother's death, too - he'd been suffering from an undiagnosed breathing condition. It meant he hadn't been exhaling properly at night.
Turned out you had the same thing. ‘He's still looking after me,' you smiled, as you were fitted with a non-invasive ventilator.
We hadn't been there when Sean died, something I regretted so much. So me and your dad moved closer to where you were living at Ashdale Nursing Home. That way, when that dreaded time came for you, we'd be there, holding your hand so you weren't alone.
In the meantime, you made the most of life - helped by the new ventilator. ‘Let's go on a picnic,' you'd say. So we'd go to the local park, and you'd naughtily nibble on a pork pie. You weren't really meant to eat solid foods as you had trouble digesting them, but you couldn't resist. ‘I won't tell if you don't!' you grinned.
Things that other families take for granted, we cherished. Like watching the X Factor together. ‘She's brilliant,' you gasped when Leona Lewis came on.
‘Pretty, too,' I teased.
‘I hadn't noticed,' you grinned.
And Gavin, remember how fantastic that last Christmas was? We spent it at Ashdale, you looked so handsome in your new Chelsea football shirt.
‘My new computer is fantastic!' you laughed. ‘Thanks.'
Bless you - you were tapping away on it all day while U2, your favourite band, blasted out.
Soon enough, it was time for
us to go. ‘See you next week,' I said to you, as I waved goodbye.
We chatted a couple of times on the phone over the next few days - and you accidentally called us in the middle of the night, too.
You were always knocking that little clicker device on your finger that alerted the nurses if you needed something, but it was programmed into our number, too.
Remember how you kept rolling on it in your sleep and dialling us? It was so annoying!
So when the phone rang again in the middle of the night and I saw it was you, I rolled my eyes. With a sigh, I went back to sleep, cursing that clicker.
A couple of hours later, the phone rang again. It was a nurse - there'd been a power cut at the home. ‘Gavin's ventilator switched off,' she told me. ‘You need to get here.' I'd never been so scared.
‘He'll be all right,' your dad kept reassuring me as we drove over to you. ‘They have the back-up battery pack for his ventilator...'
But the police had cordoned off your room. ‘I'm so sorry,' an officer said, pulling us aside. ‘Gavin's heart failed when the carers couldn't work the battery pack. He's gone.'
I felt your dad stagger beside me. ‘No,' he gasped. ‘Why now?' We'd always known this moment would come, but... this was so sudden. Numb with grief, we travelled home in silence.
‘I'll check the answerphone,' your dad said as we walked indoors. He always did that, didn't he? Now, he was acting on autopilot.
A voicemail had been recorded at 5.01am. Then your voice filled the room. ‘Help! I can't breathe!' you gasped. ‘Please!'
I clutched your dad's hand as we heard one of the carers. ‘Please calm down. I can't find the light, I...'
Then the line went dead. The guilt... it consumed me. You'd tried to phone home for help, but I'd ignored the call.
‘Please don't torment yourself,' your dad soothed. ‘There's nothing we could've done.'
‘Yes, but we could have been there as he passed away, holding his hand,' I said, voice juddering I was shaking so much.
Even after police had taken the recording away, I'd hear your tortured voice. ‘I'm sorry,' I'd whisper. ‘We weren't there at the end like we'd promised.'
Desperate to make it up to you, we came to see you at the chapel of rest. Forgive me, we couldn't stay long, it was too traumatic. Your hair and fingertips were wrapped in plastic for forensics.
‘I love you,' I whispered. Then I fled. I hope you heard me, darling.
We arranged for you to be buried in your prized South Africa rugby shirt. As we played U2's With Or Without You, I realised I had to remember your positive, fighting spirit. I couldn't let the tragedy of how you'd died eat away at it.
‘The night Gavin died, he told me he'd entered the X Factor,' one of the staff said afterwards.
‘That was my son,' I laughed, gulping back tears.
Later, we buried you alongside your brother. You're together again. Me, your dad, and your sisters, Jackie, 45, and Joanne, 41, will never forget you.
Your death was so avoidable, though. None of the staff was trained in how to attach the battery pack, but it isn't a legal requirement. At your inquest, we heard how they'd battled in darkness to attach the battery pack using the light from a mobile phone. They'd tried their best.
But we won't stop fighting for a change in the law, so we've written to our local MP and the Health Secretary for Wales. We take our strength and courage from you and Sean. Just like the two of you, nothing will stand in our way.
Love, Mum x
Val Proctor, 70, Saundersfoot, Pembrokeshire