Fresh hope
We’re still searching for a cure
Holding my son George for the first time in February 2017, I was elated. After a healthy pregnancy I’d been induced at University Hospital Coventry and Warwickshire.
Now George was here, brother to Holly, then 3.
My husband Tom, then 30, and I felt blessed.
But a few hours after he was born, George began gasping for air and turned blue.
Nurses rushed him to the neonatal intensive care unit, put him on a ventilator.
‘What’s going on?’ I begged.
But it was two weeks before doctors could tell us that our beautiful son had lung surfactant deficiency. Tom and I listened in shock as they explained that it was a rare condition caused by a faulty gene, and meant that George’s lungs didn’t work properly. He’d suffer lifelong breathing problems. ‘There’s no cure,’ doctors explained, ‘and very few treatments available.’ They couldn’t tell us how long we’d have with our boy. We held George’s hand, told him we loved him. But my heart broke every time I looked at his frail little body hooked up to a machine that breathed for him. He also needed a feeding tube. We were desperate for a miracle. Three months later, we got one. ‘George is breathing on his own,’ doctors said. ‘He’s well enough to go home.’ We were thrilled. Only, while George had improved, he still needed to be hooked up to oxygen all the time.
He was also tube fed to ensure he could get as many nutrients as possible into his stomach.
Back home, we learned how to manage his condition.
It wasn’t easy. Whenever he caught a virus or had difficulties breathing or feeding, we were back at hospital.
Holly was incredible. Always calmed her little brother down, singing to him or stroking his hand.
George celebrated his first birthday, then his second and third.
‘He’s thriving,’ I grinned. At 4, we sent him to mainstream school.
Such a chatterbox, he was thrilled.
His lungs were doing well, strong enough to cope without oxygen.
And although George still needed a feeding tube, he could eat normally too.
There were still regular check-ups, but the more he grew, the stronger he became.
Then, on his sixth birthday in February 2023, he finally had his feeding tube removed.
The best present!
And the next step in a more normal life for our little boy.
We don’t know what George’s future looks like.
At the moment, he still needs oxygen, but only when we travel.
And he’s in and out of hospital having check-ups.
It breaks my heart to think of other families going through what we’ve been through.
It’s why it’s such a relief to know that Action Medical Research is supporting research into lung surfactant deficiency.
Every day I hope for a cure, for George and all the other children out there who are affected by this cruel disease.
Doctors couldn’t tell us how long we’d have with him