Warrior of the Week

Introducing our Beautiful Bella as this week’s Warrior of the Week, here Mum, Belen, tells her story.

This is our little Bella-Boo. She has just turned two and is the craziest, funniest little human we’ve ever come across. Bella is deeply loved by her two sisters, all our family, friends and carers at nursery; she is truly an infectious little girl whose cheeky giggle makes everyone smile.

Bella turning two was a bitter-sweet day for us – whilst we were celebrating her getting a year older with lots of people around us in a brightly decorated room, there was always an underlining feeling of what the past two years have meant for us and our family.

On 4th May 2016, when Bella was just 7 months old, we ended up in A&E following some unusual spasm like movements, I couldn’t put my finger on it, but something didn’t feel right. They happened in rhythmic clusters and her eyes were rolling back – within 15 minutes of me calling an ambulance we were on our way to Poole Hospital. The paramedics, whilst caring, assured me they thought it was nothing more than common baby movements or potentially reflux. The rest of the night is a bit of a blur, but at one point, a Registrar came in and asked if they looked like ‘salaam’ movements – whereby the arms would go up and the head down – they did I said, she mentioned ‘Infantile Spasms’. I spent the night filming any clusters of spasms and scanning the internet for information (which where I came across the amazing International Infantile Spasm Facebook support group). By morning I was pretty convinced this was exactly what Bella had and knew that the only way to be sure was an EGG which we had scheduled for 7.30am – if Hypsarrhythmia (the pattern associated with Infantile spasms) was found – then we knew she had IS. My husband arrived that morning and I gave him a very rose-tinted run down of what may be, I didn’t want to alarm him unnecessarily.

Following the EEG, which was only short, we went back to the ward very emotional. A few hours later, a Doctor arrived to say it was great news and Hypsarrhythmia was not present – I was overwhelmed with joy, and explained to my husband what fantastic news this was, we were so incredibly relieved. Unfortunately, a matter of hours later, the Consultant arrived and apologised- we had been misinformed and Bella did indeed have Infantile Spasms and the gruelling course of steroids needed to begin straight away.

The 18 months that followed that diagnosis have been the hardest, most emotionally challenging times we have ever experienced. In that time, we have welcomed another daughter, Reya, into the world, we have spent countless hours at appointments and assessments, we have laughed and cried and we have set up this amazing charity, UKIST. I don’t need to tell you as group that follow the journey of this charity, what IS can mean in terms of long-term prognosis or how crucial early diagnosis is to the longer-term outcome – but it was important for us that something good came out of something so awful. I could not be more proud of what the charity has achieved in its short life – and much like Bella, it appears IS families and their friends are a true force to be reckoned with.

Bella has just started walking really confidentially and starting to show the first signs of speech – we know we still have a long journey ahead of us but we will continue to be hopeful and push forward every day – she has been seizure free since treatment and we have every reason to be positive.

 


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