Full width content image

More Than Survival: how Rainbow Trust opened doors for Carly and her family

Carly is mum to five-year-old Arthur, and three-year-old Esme.  

Despite having a normal pregnancy and birth, at around six months old, Carly noticed that Esme wasn't reaching her milestones 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 called 999.  We were taken to A&E, where she had an electroencephalogram and doctors diagnosed her initially with infantile spasms syndrome, before later diagnosing her with severe 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, combined with everything else, 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 tried to 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 that we had to go to hospital. I had this lovely outfit for her, but she was lying there having seizures with a tube down her throat. That was an extremely difficult time. I was on my own, my family were a hundred miles away, Arthur couldn't be with me. I was at my complete lowest.'

Carly spoke to a psychotherapist at the hospital, and they suggested to get in contact with Rainbow Trust. Family Support Worker Georgia started supporting the family in January 2022. More recently, they have been supported by Family Support Worker Michelle. Carly described the relief having Georgia and Rainbow Trust’s support has made to her family.  

‘Having Family Support Worker Georgia around means there is someone there to help me watch Esme.’ 
‘Georgia is someone that I can offload to. I can be at home on my own a lot without seeing another adult, so it is just great to have her. She is impartial, she’ll give me honest opinions and will always try her best to find answers to my questions.’ 
‘She has given me practical support when I have needed it if I have been overwhelmed with something. At one point, I was given some surfing therapy but had no one to look after Esme to be able to do it. 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.  In these one-to-one sessions Georgia gives Arthur all of her attention so he has somebody that he can trust, that he can talk to.

‘She does activities with Arthur, and takes 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 sourced 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 has been there since just after Esme’s diagnosis – she has been on the journey with us. I know if I had a crisis, even if she physically couldn’t come and help, 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 is like a safety net for us.’  
‘With the help of a Family Support Worker it isn't just survival anymore; their support opens up so many other doors. It doesn’t just help me either, it helps Arthur too.’  

Please donate today to help us support more families like Esme's.

Donation image
Donation payment types
Donation payment values.

£5 could provide bereavement support to help a family cope with the death of a child.

Continued support for a family for as long as they need us

Continued support for a family for as long as they need us

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.

We provide bespoke continued support to families, helping to negotiate life after a diagnosis. We offer practical and emotional support to the whole family, through their darkest times.