This is the story of Nia from our Carefree break for an Invisible Army exhibition
Discover more about the full exhibition in our Carers Week 2025 round-up.
Nia and Francis were thrilled to be expecting a baby boy. At 40 weeks, Nia went into labour, but sadly the hospital failed to notice their baby was in distress. When he was born unresponsive and not breathing, doctors performed CPR for 15 minutes until he started breathing again. He was rushed to the Neonatal Intensive Care Unit (NICU) and put on a ventilator. The hospital warned Nia and Francis it was unlikely their baby would survive, as he was not strong enough to come off the ventilator. They named him Jayden, and Nia's family came from Wales to say their hellos and goodbyes to him. However, after the ventilator was turned off, Jayden began breathing on his own. Nia and Francis's excitement was short-lived as the doctors explained he might not be able to smile or eat independently, due to the extent of the brain injury.
Jayden was diagnosed with Hypoxic-ischemic encephalopathy (HIE), a brain injury, Cerebral Palsy, epilepsy, and Cortical Visual Impairment (CVI), a brain-based visual impairment where the brain struggles to process visual information despite healthy eyes, due to the lack of oxygen to the brain at birth
Before Jayden's birth, Nia had been a nanny for a family in London for six years. "The idea was to have Jayden and then go back to work and take him with me," says Nia. "Of course, this plan had to change as I was unable to offer the attention the other children needed because of his high needs." Instead, she left her job and became Jayden's full-time carer.
Jayden is now three years old, smiling, sitting up with little aid and eating orally. He loves music, dancing, and the sound of the hoover. He also says the word "yes" with such clarity. Nia is modeling how to shake his head for "no," which he has started to pick up. It is unlikely that he would have achieved these milestones without the love of his parents and Nia's tireless work conducting endless research into therapies and equipment. She found a company that was visiting the UK from Canada and providing Dynamic Movement Intervention (DMI) for children with Cerebral Palsy. Nia signed Jayden up to be a 'demo child' as they were training workers in the UK. "I saw such an incredible difference in him, even after a few sessions," she explains with such pride. "He was able to lift and hold his own head up, it's a milestone we'd been working towards for a long time". Nia desperately wanted this therapy to continue to see what further progress Jayden could make, but in the UK there are only a few places that offer this therapy and a full course costs £7000. In Canada, where the founder is based, Jayden would have been able to access the therapy along with flights and accommodation for them all for the same price. But for a family living on one income, neither of these options are available.
Jaden was offered one physiotherapy session a month on the NHS, which Nia felt was not enough for her son to thrive. She continues to research, advocate and test different equipment and therapies until she finds something that works for him. They're currently testing an eye gaze, a type of assistive technology that tracks where someone is looking, to aid in communication. "It's on loan to us for three weeks - to apply for one longer term we have to show he has an understanding," Nia explains. "I do hope he can learn to use it as this would give him control over what he watches and be able to talk to me." All of Jayden's equipment is so expensive. His chair and standing frame were provided by the
NHS, but the family have had to fundraise for everything else. "As a carer you take a huge financial hit," says Nia. "If we didn't fundraise, Jayden wouldn't be where he is today."
In the family home there is equipment everywhere. "There's so much more I want to get Jayden, but our home is small and not accessible," says Nia. "I love this house but it's just not practical. There are stairs, the bathtub is low, there's no room for Jayden to use his walker and the stairs from the living room to the kitchen don't have a rail, so I struggle to balance when carrying him." Nia was born with a muscle weakness condition - her body is really starting to struggle with carrying her tall three-year-old everywhere.
"People think I have a peaceful life - that Jayden just sits in his chair smiling while I do what I need to do," says Nia. "They think I choose to be a stay-at-home mum. That couldn't be further from the truth. I feel like I've lost my identity. This is not what I thought parenthood would be for me. Jayden relies on me for all aspects of his care. He needs my help with everything - feeding, bathing, changing. He can't roll so I have to change his position throughout the night. I do his various therapies throughout the day. There are lots of things that go into our day-to-day which surpass that of the average stay-at-home parent. I'm constantly having to guess what Jayden wants and needs as he doesn't have the language to tell me. When he's crying and clearly frustrated it's so hard to know what I'm doing wrong." Nia needs to be on high alert, even through the night. Jayden wakes roughly every two hours, so she never sleeps a full night. "I have no choice but to stay positive and meet Jayden's needs," she shares, "But some days I'm so tired I could cry."
"I'd quite like to focus on being a mum for a while," Nia says. "I want to give me and Jayden a break and do things other children do like go swimming or to the park or the zoo. I feel guilty that I push him so much with therapies, but I want him to have the best start in life and use the fact that his brain learns so much quicker at this early age. I want to find a balance between being his therapist and his mum."
We have offered Nia the opportunity to go on a break. As she arrives at the hotel she shares, "This is the first time I've been away on my own since Jayden was born. I very rarely get a moment to myself so my initial thought was that I could get some 'Jayden admin' done. But then I realised that's not what this break is about - I need to take the chance to rest." Nia decides to explore the hotel and visit places in her city that she hasn't seen before. Jayden is always on her mind, but she tries to treasure this moment where it's just about her wishes. "I'm going back to the hotel, putting on my pyjamas, ordering room service and watching some telly," she decides. "A perfect evening.
Catch up with a Carefree break for an Invisible Army exhibition
To read the rest of the stories and discover everything Carefree did during Carers Week 2025, check out our summary below!
(All photo + case study credits: ©Invisible Army)
