‘Mummy am I going to heaven too?’ Carlie Glover told us her heartbreaking story to raise awareness and funds. We arranged for her story to appear in Take A Break magazine and will be helping the family raise more money towards treatment over coming weeks. Like our Facebook Page to stay up to date with Carlie’s story.
Mummy am I going to heaven too?
As told by Carlie Glover, 30, Bexley, South East London
‘Hello?’ I said. It was Mum.
‘It’s Billy,’ she said. ‘He’s getting worse.’
My heart sank. My brother Billy hadn’t been well for months. It had all started shortly after his 24th birthday. First of all, he began to forget things like his wallet or keys when he went out.
‘C’mon Billy! Trying to avoid stumping up for your round again?’ we’d tease, not thinking much of it at first.
But as the months passed, he began getting more and more forgetful. Then his speech started to slur like he’d had one too many.
When he started dribbling from the corner of his mouth, he went to see the GP. Only, he couldn’t find anything wrong.
We were getting more and more concerned though.
‘I’m really worried about Billy,’ Dad said one Saturday a few months on. ‘He’s really not himself. Today he walked right out of his front door and into the road.’
‘The dual carriageaway?’ I gasped. ‘It’s a wonder he didn’t get killed.’
It was like his brain wasn’t working properly.
Doctors carried out test after test but still they couldn’t give us an answer.
By the following January, Billy was forgetting to eat. He had to move out of the shared house he lived in and back home with Dad. We were distraught as our ‘jack-the-lad’ brother slowly degenerated before our eyes.
My little brother, who worked long shifts on the local council’s recycling team and liked nothing better than playing a game of football with his adored nieces and nephews, turned into someone we hardly recognised.
Now, Mum explained, he’d been watching TV and when he tried to get up from the sofa, he couldn’t. It was as if he’d lost the use of his legs.
We were all scared to death.
‘This time, they’ll have to come up with some answers,’ I told her.
Billy was put under the care of a neurologist who sent for a brain scan. But the news wasn’t good.
He was diagnosed with Adrenoleukodystrophy (ALD), a terminal disease that kills off part of the brain, in January 2015.
We’d never heard of it. Turning to Google, I discovered that it causes boys between the ages of four and 10 to suddenly regress, leading to blindness, deafness, seizures and loss of muscle control, and progressive dementia. The adult forms of ALD has the same impact but progresses more slowly. Basically, Billy was a ticking time bomb.
‘But how did he get it?’ my sister Katie asked.
That was the scariest bit of all. It was genetic. Tests revealed that Mum was a carrier.
‘You can’t blame yourself,’ I told her as she sobbed, wracked with guilt. None of us could have known.
But as I comforted her it didn’t hit home that my boys might be at risk too – even when she explained that the rest of the family had been offered genetic screening to see who else carried the gene.
My boys JJ, then six, and Zaki, one, were so fit and well that it didn’t even cross my mind that they might have the same condition as my brother.
My sister Katie got her results back first, in July 2015.
‘It’s not good news,’ she wept. ‘I’m a carrier.’
‘No!’ I cried.
‘I’m really worried about Tyler,’ she continued. ‘I think he could have ALD. Everything seems to fall into place now…’
My nephew Tyler, then six, had started having problems with his hearing over a year ago. By last March his school was concerned as well so Katie had it tested. The doctor thought it could be due to the whooping cough he had earlier in the year.
Only, it kept on getting worse so she kept going back to the doctor. She was sent away, accused of being an over-protective mum
‘Try not to panic,’ I told her. But deep down, doubt niggled.
A few weeks later, Tyler had an MRI brain scan done. Our worst fears were confirmed. The neurologist sat Katie down and told her that he had extensive damage to the back of his brain. It was already so advanced no treatment could be offered and doctors estimated he would not live to 10.
‘She said we could have about four years with him,’ Katie told me, her voice breaking.
The whole family was devastated. And I was petrified for my boys. I was awaiting my results now. What on earth would they tell me?
As the weeks slipped by, Billy grew worse, fast. He lost his speech and mobility and dropped from 10 stone to seven because he couldn’t swallow.
He was then admitted to hospital where they gave him a PEG tube in the stomach for food.
Tyler was deteriorating too. He was in a wheelchair now. I knew JJ wouldn’t be far behind.
I was at work when I got the phone call in September 2015.
We’d like you to come in for a chat,’ the nurse told me.
‘Just tell me. Please,’ I begged. ‘I need to know.’
She took a deep breath, ‘The test has shown you to be a carrier and both your sons have tested positive for ALD. I’m so sorry.’
And just like that, my world fell in. My family rallied round as I struggled to cope with the news.
‘We’ll get through this together,’ Katie promised.
Thankfully, our other sister was not a carrier, sparing her three sons.
Within the week, both JJ and Zaki had been for MRIs. JJ was advancing, he was already struggling with his fine motor skills. Zaki was not showing any symptoms yet but it would only be a matter of time.
‘Is therefore nothing you can do to help them?’ I begged.
There was a slim chance that a bone marrow transplant might buy JJ some time.
‘Alternatively, it could speed up the process,’ the consultant warned. ‘Unfortunately we won’t know the outcome until we try.’
It was a risk, but what choice did I have? ‘I’ll try anything,’ I said.
‘We can’t give up hope,’ Katie told me.
I knew she was right but then on New Year’s Day, less than a year since his diagnosis, Billy passed away in hospital. He was just 28.
We were all devastated. Especially JJ. He adored his uncle.
‘Mummy, he asked. ‘Will I be going to Heaven like Uncle Billy? Is Tyler coming too?’
‘We hope that this special blood you’re getting will make you better,’ I told him. JJ was in hospital having chemo to prepare him for the transplant.
Six weeks after we’d said goodbye to Billy, JJ had his bone marrow transplant. I prayed for a miracle.
Two weeks later, he was still recuperating in hospital when he fell out of bed. The next day he did it again. Slowly, it dawned on me that his legs had stopped working just like Billy’s and Tyler’s.
‘The transplant has made the ALD come back more aggressively, hasn’t it?’ I said, gutted.
‘I’m afraid that it certainly looks that way,’ JJ’s consultant agreed.
We were transferred to Bristol Children’s Hospital so JJ could have an intensive physio. Zaki stayed at home with his Dad so he could still go to nursery. I wanted him to have as much of his usual routine as possible.
‘Then when JJ is feeling better we’ll come home,’ I told him, his big eyes uncomprehending.
But JJ wasn’t getting better. By March he had completely lost the use of his legs.
Then even sitting up unaided was hard for him and his speech started to slur. He was fed by a peg fitted in his stomach as he was struggling with swallowing and fluid going into his lungs.
By the middle of March, his eyesight had started to deteriorate.
‘I look at him and see Billy,’ I told my sister.
She knew exactly what I meant. And JJ was a smart cookie. The disease destroys the body but not the mind meaning he was all too aware of his fate. He knew he was following in his Uncle Billy’s footsteps.
‘This special blood isn’t going to work is it, Mum?’ he asked me one day.
‘We have to keep trying,’ I told him, biting back tears.
Gradually, JJ lost the use of his hands, then his head started to move involuntarily. It was heartbreaking. Three weeks ago, JJ was transferred to Evalina Children’s Hospital in London.
It meant we could be back with Zaki again. He’s only two but he’s aware of the change in his brother.
Thankfully, Zaki’s six monthly MRI scans are showing no change to his brain at all. There is hope that he may benefit from stem cell treatment to extend his life. But for the others it is too late.
The other day, JJ asked me if he will end up like his uncle Billy in heaven and if his cousin is going too. Tyler is now totally deaf and blind.
‘We have to keep trying son,’ I repeated. Well, what else could I say to him?
Two years ago we were just a normal family but in the last 12 months our lives have been blown apart. I’ve lost my brother and I will lose my sons and nephew, too. It’s like it’s stalking us one by one.
Me and my sister torture ourselves knowing we have passed this to our boys. But by the time we knew it was genetic we already had our families. If we had known Billy had this we would have at least taken steps and not had our kids only to condemn them to pain and death. We want to see screening for ALD at birth like there is in some states of America
Sadly, we had no idea our boys were living with a death sentence until my brother got ill and the tests revealed what was going on. The worst part is they saw what happened to Uncle Billy and know what is coming. Yes, we have each other but what we face as a family is imaginable. I wouldn’t wish it on anyone.
To help the family raise funds for treatment abroad that might help save Zaki please visit. https://www.gofundme.com/JJ-ZakiFightALD