It’s every parent’s worst fear – finding out your baby has a life-threatening illness.
Sadly, that’s exactly the situation faced by mum Belen Sullivan Robbins, who recently discovered her baby Bella had a rare and particularly dangerous form of epilepsy, called Infantile Spasms.
What Belen did with this heartbreaking information was amazing. She posted a video on Facebook showing little Bella having a ‘cluster of spasms’ – with the aim of helping other parents spot the small signs of this various serious disorder.
She also shared her experience of the whole diagnostic process in an incredibly touching post on her Facebook timeline.
It’s no surprise that the video has already been viewed more than 10,000 times.
You can watch it below…
Perhaps most surprising is that the spasms are not that apparent, but look closely and you’ll see Bella’s eyes roll upwards and her arms move upwards.
“It has been the scariest week of our lives,” Belen wrote alongside the video. “But we’re pleased to say it looks like things are hugely improving.”
Belen’s daughter has been diagnosed with a form of epilepsy called infantile spasms (IS), which usually affects babies aged between 3 and 8 months old. In the UK, 350 – 400 children have the condition.
“Infantile spasms often lead to neurological impairment and disability,” explains Belen, “BUT if caught early the outcome can be more positive – which is why we can’t believe there isn’t more awareness of it.
“We’ve decided to put a little video of Bella having a ‘cluster of spasms’ – little bit raw still, but if it helps raise awareness that’s fine with us! Bella’s first little spasms didn’t seem like much but a bit of parental instinct goes a long way and after witnessing 3 or 4 spasms I dialled 999.
“We don’t really know what the next few months or years will look like… she may continue to hit her milestones, she may be a little delayed due to the treatment, and go to grow up never knowing anything of this horrendous time, or it could be more challenging. Either way, we’re comforted in the knowledge we acted as fast as we could.
“Share away and we’ll keep you updated.”
We think that going public with their story is an admirable thing to do – and we hope little Bella makes a full recovery.
What should you do if you suspect your child might have a form of epilepsy?
As Belen writes beautifully in her post, parental instinct is incredibly important. Trust your instincts; if you feel like something isn’t right, then talk to a doctor. Much better to be safe than sorry.
Information on infantile spasms, including symptoms to look out for, is available on Epilepsy Action’s website or for more advice or support, you can call Epilepsy Action’s free helpline on 0808 800 5050.
If you have any concerns, please seek help and advice from a medical professional as soon as possible.