Esme's Story

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Carly is mum to four-year-old Arthur, and two-year-old Esme.  

Despite having a normal pregnancy and birth, at around six months old, Carly noticed baby Esme wasn't reaching her milestones. It wasn’t long before Esme started showing signs that something was not right. 

‘One day, out of the blue, Esme began to have odd movements that looked like an exaggerated startle reflex. Our GP and Health Visitor were unsure, but the movements increased in frequency and really distressed Esme, so I made the decision to call 999.  We were taken to A&E, where she had an electroencephalogram and doctors diagnosed her initially with West Syndrome, before later diagnosing her with epilepsy.’  

Carly described how this initial diagnosis led to further investigation of her condition. Esme had genetic blood tests, MRI and Lumbar puncture. Esme’s development plateaued, and her seizures became more frequent and harder to control, which resulted in multiple continued hospital admissions and appointments. With Esme’s complex medical needs and the frequent hospital trips, everyday life has completely changed for Carly. 

‘Everything has to work around Esme and her medical condition. I can’t really plan in advance anymore, I can’t travel like I used to, I can’t see my family and friends like I used to.’ 

Arthur, Esme’s four-year-old brother, was not able to spend as much time with his mum as he previously did. Carly said this caused a change in dynamic with Arthur because at times she just does not have the energy or time to enjoy activities like they used to. She finds this ‘mum guilt’ one of her biggest challenges and this took a toll on Carly’s mental health. She explained how initially, she could not cope

‘When we first got Esme's diagnosis of epilepsy, I sort of convinced myself that she’ll be okay. But as time went on, she just got worse. On her first birthday her seizures got so bad we had to go to hospital. That was an extremely difficult time. I was on my own, my family were a hundred miles away, Arthur couldn’t be with me. It was Esme’s first birthday; I had this lovely outfit for her, but she was lying there having seizures with a tube down her throat. I was at my complete lowest.’  

It was at this point that Carly spoke to a psychotherapist at the hospital, and they suggested to they get in contact with Rainbow Trust. Family Support Worker Georgia has been supporting the family since their referral in January 2022. Carly described the relief having Georgia and Rainbow Trust’s support has made to her family.  

‘Just having Family Support Worker Georgia around means there is someone there to watch Esme.’ 
‘Georgia is someone that I can just offload to. I can be at home on my own a lot without seeing another adult, so it’s just great to have her. She’s very impartial, she’ll give me honest opinions and will always try her best to find answers to my questions.’ 
‘She’s given me practical support when I’ve needed it if I’ve been overwhelmed with something. At one point, I was given some surfing therapy but had no one to watch Esme. Georgia helped by arranging our sessions so she could be on the shoreline with Esme while I was in the water and could go to the therapy.’ 

Georgia also provides sibling support for Arthur, taking him out and organising fun activities for him.  

‘She does things with Arthur, like taking him out – he always looks forward to seeing Georgia. Because I can’t work anymore, we haven’t been able to go out like we used to. Georgia has been able to get us tickets to places like Paulton’s Park so we can go as a family – which is something really nice and special.’ 
‘Life without Georgia would be really difficult; Arthur would really miss her. It would be a big loss for me too. Georgia’s been there since just after Esme’s diagnosis – she’s been on the journey with us. She knows us really well, I know if I had a crisis, even if she physically couldn’t come and help that she would find someone who could, and she would listen’.  
‘I feel like she has our back and I know I can confide in her. She’s like a safety net for us.’  

Carly’s message to other parents and carers who may be thinking about reaching out for her would be to ‘just do it’.  

‘Once you let the support in, it isn’t just survival anymore and it opens up so many other doors. It doesn’t just help me either, it helps Arthur too. Just do it, there is no judgement.’  

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Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

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