Like many children aged two-and-a-half little Alice Bragg loves to be the centre of attention. She is, says her mum Jenny, cheeky, creative, sociable – and stubborn. “Alice is a self-made princess,” Jenny says with a smile.
But Alice also experiences great frustration because she is severely affected by cerebral palsy.
We were heartbroken
Thankfully, Alice can speak and her intellect is not affected. “She is a bright and happy child but she gets so frustrated because she can’t walk, crawl or even sit up without help,” Jenny says.
Like her big brother Jack, Alice was born prematurely. Delivered at 32 weeks, weighing 4 lbs 11oz, an ultrasound scan in hospital revealed no signs of brain damage. Jenny and her husband Matthew felt reassured that their newborn daughter was healthy.
Alice was allowed home after just 19 days in hospital and, at first, all was well. But at her six week check-up, the consultant delivered the devastating news that Alice had cystic masses on her brain, indicating severe brain damage.
Baby Alice had suffered a lack of oxygen at some point in Jenny’s pregnancy or during her delivery, leading to severe and irreversible brain damage.
She was diagnosed with a condition called periventricular leukomalacia (PVL). Cerebral palsy is the most common symptom of PVL. Sadly, Alice is severely affected, with movement difficulties in her torso and all her limbs.
Life can be challenging
Aware of the benefits of early intervention, Jenny set about organising physiotherapy and this is greatly helping Alice. But the future can seem extremely daunting.
“Sometimes I look to the future and that’s what upsets me,” Jenny says. “My main issue is that Alice is bright and she will have to deal with having a permanent physical impairment. How will she cope? How will we help her to cope?”
Vital medical research
Around 2,000 babies are diagnosed with cerebral palsy every year in the UK. Children’s charity Action Medical Research is dedicated to helping these children by funding vital research into cerebral palsy.