“Her condition is unique – hers is the only case in the world, she’s one of one – and is caused by a mutation in her SCN2A gene, meaning her system lets through too much sodium and sets her brain cells loopy, for want of a better word” said Ben, Wren’s dad. It took months after she was born to get a proper diagnosis, and it wasn’t until she was blue-lighted to the Evelina London Children’s Hospital with a seizure that just wouldn’t stop that it felt like the family’s concerns were being taken seriously. After weeks of tests, during which they knew almost nothing and continued to struggle with symptom management, she was finally give an official diagnosis. The family would discover as time went on just how much this genetic mutation would affect Wren’s life.

Ben said: “Wren has basically every type of seizure, and they all affect her in different ways and for different amounts of time. Outside of her epilepsy, she also has global developmental delay so she can’t really walk, talk, or anything like that.

“She can’t eat or drink either, so she has to be peg-fed. That one little nerve cell, that’s gone wrong as a total genetic fluke, causes all of those issues.”

The family self-referred to Demelza, as Wren’s prognosis is very uncertain. Ben hasn’t heard of any cases where a child has survived into adulthood, and they had to face the horrible reality that Wren might not live a very long life. They knew they needed to be proactive about seeking out whatever help was available to them – starting with Care at Home sessions provided by Demelza’s skilled care team.

“As boring as it sounds, often we’d use these sessions to catch up on sleep. Even with a very comprehensive care package, we’re up constantly throughout the night as Wren requires medications and feeds every two hours. She also experiences sleep apnoea, which means five to 10 times a night she may simply stop breathing while she sleeps; just a bit scary! Having these Care at Home sessions has given us a bit of sanity back.”

The family eventually made the brave decision to bring Wren into Demelza’s Kent Hospice to take advantage of respite care. Knowing how complex her needs are, it was almost unthinkable leaving her even for those few short days, but their positive experiences with the care at home team helped put them at ease and reassured them that she would have the best care possible.

“We used the time that Wren was in for respite to spoil Aria, giving her a day that was all about her,” Ben said. “We took her to a sandy beach – which would normally be impossible with Wren’s heavy buggy and its whole hospital-bed’s worth of equipment – before enjoying a nice dinner. Being able to spend that time guilt-free with Aria, because we knew for a fact that Wren was in safe hands, was so important both to myself and Robyn, and to Aria.

“Aria’s surprisingly amazing about Wren’s condition, and it’s mad how much she knows – we got her a set of toy doctor’s tools and I remember her holding one up and going ‘look daddy, it’s an otoscope’” Ben said. “Although it’s cool in a way that she knows all that, a four-year-old shouldn’t have to, really. It’s heartbreaking when Wren is having a bad day and we have to take her to hospital, or she’s whisked away in an ambulance, especially if it’s overnight. Aria will often wake up in the morning and find one of us has disappeared with Wren which causes her so much worry. That’s why having those opportunities to spoil her and help her feel like any other little girl is so important to us.

“After everything Demelza have done for us, and other families like ours – I was really keen to give something back; their Mount Kilimanjaro Trek is an opportunity for me to do just that.”

This mega challenge organised by Demelza will be held over 10 days, and by the end the incredible team taking it on (comprised of several individual fundraisers like Ben as well as some of Demelza’s own staff!) will summit Mount Kilimanjaro – the world’s tallest freestanding peak. Each member of the team will raise at least £4700 for Demelza’s services; a huge amount which will make an unimaginable difference to families like Wren’s.

“I’m obviously apprehensive, and it’s not a decision I’m taking on lightly – we had discussions with care teams both at Demelza and the Evelina to discuss Wren’s care while I’m gone, as well as the worst-case scenarios for her health, and how long I might have to get back home from Africa if she were to deteriorate. Armed with the information from those meetings, and admittedly with a push from Robyn, I feel prepared to take on Kilimanjaro.”

If you can afford to donate and show your support for Ben and his incredible undertaking, you can find his JustGiving page here – every penny raised will go directly to Demelza’s services, which in turn will help support children with serious or terminal conditions