No matter what
Victoria Baynham, 34, from Barry, Vale of Glamorgan, couldn’t be prouder of her courageous boy.
Considering how much my son had been through, it was testament to Alex that he was always so happy. You couldn’t fail to smile when he looked at you with his big eyes in the morning – just waiting for the next adventure.
And boy, had it been a rollercoaster so far!
Despite tests showing that there was only a one in 1,400 chance of Alex having Down’s Syndrome, when he was born on 3 June, 2005, at University Hospital, Llandough, he had the condition.
My husband Gareth and I adored him from the moment he came into the world – and so did his brother Ryan, now 11, and sister Bethan, now five.
‘He’ll just need a little extra help,’ I told them, but within days, he needed a great deal of help.
Alex’s lungs collapsed and he struggled to swallow and breathe. He had to be tube-fed until he was strong enough.
For three months, we went back and forth to the hospital until he was finally allowed home.
But at nine months, he needed surgery to repair a hole in his heart.
Growing up with his siblings, Alex was such a happy little boy.
Even though he was developing slower than other children his age, he went to nursery and easily made friends.
He’s such a blessing to our family, I thought daily.
He taught us how to see the positive in everything and to accept all our differences. When Alex was five, he came home with a runny nose and I thought he just had a simple cold.
But when he blew it, there was blood and he developed chicken-poxlike spots on his chest.
I was worried, so took him for a check-up.
When he was referred for tests at the University Hospital of Wales, I grew more anxious.
Still, the diagnosis came as a huge shock to me.
‘I’m afraid it’s leukaemia,’ the consultant said.
I broke down. Hadn’t he been through enough already?
There was no way I was asking about his future prognosis because in my eyes, there was only going to
Hadn’t he been through enough?
be one outcome.
Alex was going to live.
After being admitted onto the Rainbow Ward, he started chemotherapy via a line, every day for three months.
We tried our best to explain what was going on, without frightening him.
‘This will make you better,’ I soothed, as he struggled to get used to it all.
The nurses did a fantastic job, but Gareth and I knew him best, so we worked out a rota that would mean one of us was always with him, even when he slept.
And when he was awake, we spoilt him rotten!
We brought in his favourite DVDS and even got him Mcdonald’s at 3am when he asked for it.
After everything he’d been through, he deserved it.
After six long months, Alex was able to come home and finally, in April 2012, he was in remission.
It was fantastic news, and it was amazing to see him go back to school with all his friends.
Another battle won, I thought, so proud of how Alex had coped.
So when Make a Wish offered us a three-day trip to Disneyland Paris for Alex’s 10th birthday, we jumped at the chance to give him some fun.
As we walked round the attractions, Alex was wide-eyed with wonder and I loved that we were making special memories, away from the hospital.
But as we headed back to the hotel, Alex started to blow his nose and when I checked his hands, my heart stopped. The spots had returned. ‘The cancer is back,’ I stammered to Gareth. And the fun was over. Back home, a consultant confirmed our worst fears.
But this time, I didn’t cry – I was furious. Why Alex again? It felt so unfair. My brave boy started an intensive form of chemotherapy, but it was too much for him. He got an infection and his body started to shut down.
I was terrified when he was transferred to the high dependency unit and told that he needed to have an operation.
They needed to take his infected chemo line out as the infection was travelling down towards his heart.
‘He’s extremely poorly,’ the doctors warned. ‘He may not make it.’ We were told that we should all say our goodbyes, in case he didn’t pull through. ‘No!’ I screamed. ‘I don’t want to.’ But I had no choice. ‘Come back to me,’ I whispered. Gareth and I spent the longest night waiting for Alex to come back to the ward and when he did, I was triumphant.
If anyone could overcome the challenges we were facing, it was our Alex.
He was still in a critical condition and on life support.
His body was so weak and the
antibiotics just weren’t fighting the infection.
For three months, he fought on while the doctors said that his time was running out.
‘I won’t switch off his life support until he gives up,’ I vowed. And he never did. Finally the antibiotics took hold and Alex started to come round.
‘He’s coming back to us!’ I cried, squeezing his hand as I watched him move slowly.
Back on the Rainbow Ward, Alex recovered enough to come home in January 2016.
And the following year, our Alex was finally in remission for the second time.
Today, Alex is 13, and you’d never know he had fought back from the brink so many times.
No matter what is thrown at him, he fights back, and we’ll always be by his side to cheer him on.
I still think about it all the time, and we have regular check-ups, but Alex is too busy playing on his ipad, playing with his mates and eating crisps to worry about all that!
He’s a typical teenager, and I wouldn’t have it any other way.
I’ve always known that Alex is extra special, but he continues to prove it in the most heroic ways.
Alex was such a contented lad
Not having him was unthinkable
His siblings adore him
We’ll always be by his side
We were told to say goodbye to our boy