Meet Esme and her family

Alone in a hospital room Carly was told that her daughter may not make it to her fifth birthday. Shortly after, Rainbow Trust began supporting the family.

After a normal pregnancy and birth I noticed that my six-month-old baby, Esme, was starting to miss typical baby milestones. Then, one day, out of the blue, Esme began to have odd movements, spasms.

We rushed to Southampton General Hospital where she was later diagnosed with a severe form of epilepsy. When we first got her diagnosis, I convinced myself that she would be okay. But Esme just continued to get worse

Her development plateaued and her seizures became more frequent and harder to control. Esme has stopped using her hands, has lost the ability to sit up, struggles to hold her head up and is non-verbal.

When Esme has fewer seizures, she laughs and smiles. I can see her lovely personality shining through. But then the seizures ramp up again, and it wipes the slate clean. She has to learn everything again.

A lifeline of tailored support

On Esme’s first birthday her seizures got so bad we had to go to hospital. I was on my own, my family a hundred miles away and Arthur, Esme’s now six-year-old brother, was unable to be with me.

I had an adorable birthday outfit ready for Esme but, instead, she was lying in a hospital bed, having terrible seizures, with a tube down her throat.

On that day, I opened her birthday cards wishing her a wonderful day.

On that day, a neurologist told me that she may not make it to her fifth birthday.

I was at my complete lowest.

A psychotherapist at the hospital mentioned Rainbow Trust and asked if I would like to be referred. I can’t explain the relief I felt. Rainbow Trust Family Support Worker Georgia began supporting us in January 2022 and now Family Support Worker Michelle continues the support.

This support opened so many doors and has hugely helped both me and my son Arthur. Before we let the support in, we were just surviving, not living.

With Esme’s complex medical needs and frequent hospital trips I had to stop working and dedicate myself to her care full-time. This has been very isolating and I am constantly worried about finances. Alongside this, Esme’s father and I separated. I can be at home on my own a lot without seeing another non-medical adult.

Knowing that Michelle is there for us is so important. It alleviates the isolation and loneliness.

When Esme was diagnosed, my friendships became strained. It is difficult for friends to understand when you keep having to cancel because you don’t have anyone to look after your sick baby. Esme needs special care to meet her needs and keep her safe, I can’t just get a babysitter like other people can.

Michelle supports with whatever we need. It could be just a walk and talk to the local shop to pick up groceries or looking after Esme, allowing me to have time for myself and some much-needed respite.

I can offload everything I am feeling to Michelle. She is like having a friend whenever we need it.

Mum guilt

My biggest struggle has been the impact on my relationship with Arthur. The long, often back-to-back appointments or week long stays at the hospital with Esme mean I cannot spend as much time with him. He needs energy and attention that I cannot mentally or physically give.

I have massive ‘mum guilt’ and it has taken a huge toll on my mental health.

For a time I could not cope. I was borderline suicidal.

Georgia and Michelle’s sibling support has been instrumental in ensuring Arthur gets the attention he needs to develop, without impacting Esme’s care. He gets so excited for their visits.

Recently Arthur’s room was a mess. He refused to tidy it up when I asked him. But he was happy to sort it out with Michelle so they spent a couple of hours together, tidying up and chatting. Afterwards he was delighted with how well they did.

This is so important. Tidying up gave him the time to talk about how he is feeling with Michelle, while also helping him create an organised and uncluttered environment. The relief I feel about him being excited, happy and having fun is huge.

Because I can’t work anymore, we haven’t been able to go out like we used to. Michelle takes Arthur out and organises fun activities for him, giving him some time out of the house where the focus is just on him.

We have also attended some of the drop-in groups that the Rainbow Trust Southampton Care team hosts. I can bring Esme and Arthur and know they are safe and looked after while having fun. These dropins give me a non-judgmental space to chat and share with the Family Support Workers and other parents of seriously ill children.

Having Michelle around also gives me peace of mind that, if I ever have to rush to hospital with Esme, she will pick Arthur up from school, help him to understand the situation and make sure he is cared for so I can focus on Esme.

Trying to remain positive

Despite the difficulties, I try to focus on the positives and having Michelle’s support has given me the relief and reassurance I need to do this.

Life before Rainbow Trust was incredibly difficult, it still is, but I now know that Michelle has my back, I can confide in her and she is a safety net for us.

There are so many families like Esme's, that may be feeling so helplessly alone and desperate, who need this specialist support. Please donate today to help us support more families like Esme's.

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