INSPIRING
Sophie Byrne, 31, from Larkhill, is so proud of Harry – who’s trying to keep his little brother’s memory alive.
Gazing at my newborn baby boy, I felt my heart sink. It should have been a magical time.
But something was wrong with him.
Born on 20 September 2019, Reuben was adorable, and I fell in love with him immediately.
But I couldn’t help noticing his slightly abnormal head size and his ear lobes.
‘He’s got what Olivia had,’ I said to my husband Sean, now 37.
I knew it in my gut.
Our firstborn, Olivia, had passed away at just nine months old in May 2013, from a condition so rare it didn’t have a name.
She’d been a happy little girl for her short life, before a bad seizure caused her body to shut down – we spent her last few weeks in a hospice before she slipped away.
Sean and I were first-time parents and I felt helpless – it completely devastated us.
But we were reassured the chances of having another baby with the condition would be next to nothing.
We went on to have Harry, now nine, who was perfectly healthy and happy.
When we told him Mummy was going to have another baby, he couldn’t wait to be a big brother.
But now, looking at my sweet, squirming baby boy, it broke my heart to know that he would only have a short life.
After running tests, doctors confirmed he had the condition and they rushed Reuben to Princess Anne Hospital, Southampton, where he was fitted with a stoma bag and feeding tube.
We took Harry to meet his little brother when Reuben was just two days old.
‘Hi, Reu Reu,’ he smiled. ‘I love you to the moon and back.’
Harry had always known about Olivia, and the Three Peaks challenge we did to raise money for the hospice that cared for her.
‘Your sister is a star in the sky, and Daddy and I climbed mountains for her,’ I told him.
And Harry knew Reuben’s life would be short, too.
But they bonded straight away, and it was so sweet.
‘When can Reuben come home?’ Harry kept asking.
‘Soon,’ I smiled.
After four weeks, Reuben started suffering from seizures.
It was terrifying – it felt like history was repeating itself.
But at least this time medical professionals knew more.
The condition was caused by a PIGB genetic mutation, and they gave Reuben medication to help with his fits.
Sean and I both had the faulty gene, which meant our chances of having a child with the condition were one in four – we were just unlucky.
‘I love you to the moon and back’
Reuben spent eight weeks in hospital before coming home – and Harry doted on him.
We never knew how long we’d have with Reuben, but we made the most of every day.
