Thousands of families like Esme's need the help of a Family Support Worker today, but we cannot do it without your help.
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 Carly noticed that her 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.
They rushed to Southampton General Hospital where Esme was later diagnosed with a severe form of epilepsy.
"When we first got her 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. I was on my own, my family were a hundred miles away, my son Arthur couldn’t be with me. I had this lovely outfit for her but instead she was lying there having seizures with a tube down her throat and a doctor telling me that she may not make it to her fifth birthday. I was at my complete lowest."
Esme’s development has plateaued and her seizures have become more frequent and harder to control. She has stopped using her hands, has lost the ability to sit up, struggles to hold her head up and is non-verbal.
“When the seizures are controlled, Esme develops, and she laughs and smiles and you can see her little personality shining back through. But then the seizures ramp up again and it almost wipes the slate. She has to learn everything again.”
It was at this point that Carly spoke to a psychotherapist at the hospital, and they suggested Carly get in contact with Rainbow Trust. Family Support Worker Georgia began supporting the family in January 2022 and now Family Support Worker Michelle continues the support.
“I was in a real state – I was borderline suicidal.”
With Esme’s complex medical needs and frequent hospital trips Carly had to stop working and dedicate herself to Esme’s care full-time. This was very isolating and left Carly feeling constantly worried about finances. Alongside this, Esme’s father and Carly separated, and her friendships became strained as she regularly had to cancel plans when Esme became sick.
Once you let Rainbow Trust’s 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.
Carly, Esme's mum
Michelle offers emotional support to Carly, giving her the chance to chat about how she is feeling with someone she trusts, helping to alleviate the isolation she feels. Michelle supports with whatever they need at that time, whether it’s a walk and talk to the local shop to pick up groceries or looking after Esme, allowing Carly to have time for herself and some much-needed respite.
“I can be at home on my own a lot without seeing another adult, so it’s 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... 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 biggest struggle has been the impact on her relationship with her six-year-old son Arthur. The long, often back-to-back appointments or week long stays at the hospital with Esme meant she could not spend as much time with him. Carly said this caused a change in dynamic with Arthur because she just does not have the energy or time to enjoy activities like they used to. She finds this one of her biggest challenges and has ‘mum guilt’. This took a toll on Carly’s mental health and initially she could not cope.
Georgia and Michelle’s sibling support has been very important in ensuring Arthur gets the attention he needs to develop, without impacting Esme’s care.
Recently Michelle and Arthur spent a couple of hours together, tidying his room and chatting. Afterwards he was delighted with how well they did. This time gave him the chance to talk about how he is feeling with Michelle, while also helping him create an organised and uncluttered environment.
Because Carly can’t work anymore, the family haven’t been able to go out like they 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.
The family have also attended some of the drop-in groups that Rainbow Trust’s Southampton Care team hosts. Carly brings Esme and Arthur and knows they are safe and looked after while having fun. These dropins give Carly a non-judgmental space to chat and share with the Family Support Workers and other parents of seriously ill children.
“Life without Rainbow Trust would be really difficult; Arthur would really miss them and it would be a big loss for me too. They’ve been there since just after Esme’s diagnosis – they’ve been on the journey with us. Our Family Support Worker 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.”
With your help Family Support Workers like Michelle can make the challenges that families living with childhood illness face that bit more manageable.
Please donate today to help us support more seriously ill children and their families just like Esme's.
