Caring for a child with a rare neurodevelopmental disease can come with many challenges, ones that parents would never expect when faced with such a diagnosis. Nicky cares for her 14-year-old daughter, Carly, who was diagnosed with WARS2 just last year. Her immense strength comes from years of advocating for her daughter, and for herself as a parent carer. Now, a member of the Carers First team, Nicky offers her guidance and support to other parent carers, helping them to feel part of a community who understand.
Nicky’s daughter Carly was diagnosed with WARS2 last year when she was just 13 years old, after years of trying to receive a diagnosis that explained her symptoms. It’s an extremely rare genetic disorder often likened to Parkinson’s disease, with currently only 50 known worldwide cases. With the disease affecting her mobility and movements, as well as her speech, Carly relies on Nicky to be fed, washed, dressed and looked after in every way.
Nicky first noticed that Carly was behind in her milestones at age 1 and began her journey to diagnosis. During this time, Nicky had been a paediatric secretary for many years and enjoyed getting to help others in her career. Being a positive and friendly person who loves to help others, she really appreciated her job role. Ultimately, hospital appointments and consultations to seek a diagnosis for her daughter were Nicky’s top priority, which meant that she eventually left work to care for Carly full-time, “I planned to come back to work, but didn’t end up doing that as I was focused on looking after Carly.”
For many parent carers, having a strong support network can make all the difference, even if it just lets you know that you are not alone. Finding out about Carers First around 10 years ago gave Nicky a chance to feel seen and heard, not just by professionals who understood and cared, but also by other parent carers who knew firsthand what she was experiencing. When she was offered the chance to apply for a Carer Support Adviser role at Carers First, she was encouraged by her husband, family and friends to grab the opportunity. Since then, Nicky has joined the team in Lincolnshire and feels incredibly lucky to be able to support others in the way she does, whilst being supported by the people around her, feeling part of a community:
“Working for Carers First has been really good for my emotional wellbeing, I’ve got a really good team. I moved away from my parents and sister; I didn’t have that family network around me. Coming into this job, I’ve got this great team around me and it has done a world of good for me.”
The flexibility that came from working for a charity that understands how busy life can be for working carers has allowed Nicky to still be there for Carly, as she works from home. “Having that flexibility is useful alongside the working carers passport. Taking carers leave is helpful when I have a lot of appointments for my daughter at once.”
Bravely sharing her experiences and advice so that other parent carers do not feel alone and have all the information they need to feel supported is something that is really important to Nicky, as she completely understands how vital it is to feel recognised in that role. She expresses how fulfilling it is: “It’s giving back – when you speak to carers (especially parent carers), I feel like I understand. A lot of the ones I speak to, I relate to them. With that the whole demeanour of that carer changes and they open up.”
She explains how she wants to reassure parent carers that it is possible to achieve their goals, and return to work if they wish to, speaking from her own experience, “I want to try and inspire carers to get back into work. I juggle working, a house, a family. Some days it’s challenging but ultimately its rewarding.”
There have been many challenging times where Nicky has felt frustrated and stressed about the lack of answers surrounding her daughter’s disease, with her questioning why their situation came to be, “Sometimes I feel a bit like why me? I feel guilty sometimes, it’s not fair the situation we’ve been given. I try and bring myself out of it. I blamed myself after getting the diagnosis – as me and my daughter’s father carried the gene.”
She feels as though caring has only made her stronger as a person. Her determination to advocate for her daughter and herself shines through her work and in her personal life,
“It made me stronger – I feel that I will fight for everything I want now. The knowledge I’ve gained is amazing. I won’t just settle for any kind of care for my daughter.”
Nicky’s story is one of resilience and determination. Her experience exemplifies the truth that reaching out for support can only bring fulfilment and a sense of community, something that every parent carer should have the chance to experience. She now focuses on creating and maintaining that same, strong community for other carers to thrive in.
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