I never thought I’d be discussing the life expectancy of a 14-year-old, in a coffee shop with their mother on a Monday afternoon. Salford Mum Zoe Kirkman smiles faintly at a family with a crying baby. I can only assume she’s reflecting on her own life, her own children and how things have panned out. Zoe’s phone buzzes. She mutes the call.
“He deserves to live too, not just exist between three different buildings” says Zoe of her son, Riley, who has a rare medical condition. Her eyes have a look of helplessness only a parent would understand.
Riley Kirkman is the subject of the Crowdfunder campaign to invest in a kitted-out campervan suitable for Riley’s disabilities in an effort to take the family on a journey into the countryside and towards the coast.
“At home I don’t stop,” she continues. “We’re supposed to have a village, I shouldn’t be doing this on my own.” Zoe is Riley’s primary caregiver, so balancing her time with Riley and her two other children is sometimes impossible. Having the campervan would bring a new lease of life to the family, providing them with the opportunity to escape the city.
Zoe began the crowdfunder for the campervan a few weeks ago and it has already raised £823. Zoe wants her story to be proof that “you are your child’s advocate.”
Riley was born with a multitude of health problems. He suffers from Neuronal Migration Disorder, a condition where the brain didn’t develop properly. In Riley’s case, half of his brain has too many folds (Polymicrogyria), whilst the other half doesn’t have enough (Pachygyria).
With these neurological issues, Riley’s life expectancy was 10 years. Alongside this, he has Quadriplegic Cerebral Pasley, Scoliosis and his left hip didn’t develop properly, which required hip reconstruction surgery at a young age.
Riley was also born with Congenital Long Segment Tracheostenosis, otherwise known as a narrowing of the airways, which means he struggles to breathe. Riley received surgery at just 1 week old at Great Ormond Street Hospital for this condition. “It was the only hospital at the time that did the surgery in the UK,” Zoe informs me. Whilst medical professionals worked hard to reconstruct his airways, he still aspirates, making Riley more susceptible to respiratory infections like pneumonia and chest infections.
Zoe is under no illusion that her son is going to miss out on huge milestones in life, simply because of the way he was born. “I’ve already planned Riley’s funeral. I could sit here and talk about that so easily and people just don’t understand how I can do that.”
“But we could all go away at any time, so I try not to think about it too much and just focus on what we’ve got, you know?”
Despite the circumstances Zoe and her children have been handed, she is making every effort to maximize their time as a family, which is exactly what this campervan will provide – freedom.
Being in nature is therapeutic to the family, and a “bed on wheels” to take Riley and her two other children, Dylan and Luci, to beautiful locations would give them some physical and psychological rest from a hectic home life.
Every question about the van brightens her face. “Nature isn’t just our happy place, it’s medicine. Nature heals, the bumps when walking imitates the movement of walking when Riley’s in his wheelchair, which helps loosen up phlegm on the chest.” Now, she looks like a young mum, rather than an adult whose life is in an endless entanglement with hospital visits.
The crowdfunder is set up online, titled ‘Travels with Riley’, and all donations would be a step closer to the campervan becoming a real reprieve for their family.
As we finish our coffees, Zoe’s determination is evident.
“It has to happen. I feel it in my bones. I know this is going to happen.”
• Click here to donate to the fundraiser
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