Ruby and Sophia

“This last year, we’ve found Martin House to be quite the lifeline. Your stay comes just when you need it, when the responsibilities are taken from you. Martin House makes you feel like it’s not just you."

The beaming smiles of 18-month-old identical twins, Ruby and Sophia, are enough to brighten any room. But for Ruby and Sophia’s parents, Kevin and Lyndsey, their lives were turned upside down last July when the twins were diagnosed with alternating hemiplegia of childhood, also known as AHC.
The couple live with the anticipation of what each day may bring; how many times the twins may go into full body paralysis, experience painful dystonic episodes and even stop breathing. AHC is a non-inherited genetic condition affecting the movement of salts in the brain, causing paralysis to one or both sides of the body. The condition is incredibly rare, with only one in a million children being affected. Ruby and Sophia are two of just 50 children in the UK who have the condition and their mutation is thought to be one of the most severe.
“When the girls are well, they’re unstoppable. They’re very cheeky and love to crawl and climb everywhere! But the next minute, they could have an episode and struggle to sit unaided, or even swallow. At times, it can be really hard to explain the impact of their condition, and how quickly we can suddenly find ourselves in an emergency situation. We’re so used to fighting for them because the condition is so rare”, said Lyndsey, Ruby and Sophia’s mum.
“We spent June to August 2019 continuously in hospital. At one point, the girls were even in different hospitals,
so we were anxiously going between the two, running between their bedsides.”
Pinderfields Hospital in Wakefield carried out genetic testing on the twins, to find out the cause, and worked with Martin House clinical nurse specialists to introduce the idea of hospice care to the family.
“You hear ‘hospice’ and you just freeze, but we took the opportunity to have a look around and find out more about what was offered to us. The first time we stepped into Martin House was emotional, as it’s not what you expect for your child. But we got past the preconception and accepted that we are dealing with this. A symptom of the condition is apnoeas, where the children suddenly stop breathing. These can last up to five minutes and can happen up to ten times a day, with Kevin and Lyndsey needing to resuscitate them. They also have periods of ineffective breathing, which can last much longer and led to the girls being intubated last year.
“We have no medical background and never thought we’d have to do CPR, let alone on our children. Each time it happens, you ask yourself ‘is this it?’. They can be crawling and suddenly turn blue. We’re both calm and we don’t panic. You detach yourself, because you have to get on with it.”
While the family were in hospital, a doctor from Martin House visited them to help to explain how hospice care could support the family.
“It was November 2019 when we visited for our first stay at Martin House for our first stay, and it was just brilliant. We were apprehensive about leaving them in the care of someone else, even though we were staying, too. We spent three nights at Martin House, and that was the first time we’d had a good night's sleep for at least a year. A night without a SATs monitor beeping is everything! It was a chance for us to spend some quality time as a family without worry. There’s so many opportunities to play, and enjoy music and art.
“It’s somewhere people understand you totally. I’ve often felt like I have to explain to others why they vary so much in how they are and what they’re able to do. I’ve been a part of baby groups and there’ve been parents stressing over things like their child’s first haircut, and for us, Ruby’s first haircut was in hospital so the doctors could insert a cannula into her head. At Martin House, you can talk to other parents who experience something similar and you don’t feel so alone.
“It’s a constant rollercoaster but we make the most of things on the good days. If they’re poorly together, it’s emotionally draining, but we keep going because of them.
“This last year, we’ve found Martin House to be quite the lifeline. Your stay comes just when you need it, when the responsibilities are taken from you. Martin House makes you feel like it’s not just you.”
Ruby and Sophia have also been supported by Martin House during the pandemic, receiving emergency symptom control at the hospice.
“I hadn’t quite realised how exhausted I was; I was in tears constantly. I’m so used to putting a brave face on, but when one of the nurses at Martin House offered us an emergency stay, we knew we needed to take it.
“Initially, I was so worried about shielding with the girls, so even going outside of the house was daunting, but I soon realised how safe Martin House was.
“The doctor who greeted us on arrival at Martin House was the same doctor who visited us when we were in hospital last year. I remember him asking me how I was in addition to how the girls were, and I’ll never forget that. It was a real source of support.
“We were able to enjoy the magic carpet, where they could roam around and enjoy the sensory experience, delicious home cooked meals and being outside in the garden, watching the rabbits jump around.
“The doctor did a full review of the girls as they’d been having more episodes and he helped us to update our care plans, try new pain relief and even gave me a bag and mask refresher training, for when I have to do CPR on the girls, which can be several times a day.
“It’s a holiday from real life, where we get the emotional support we need and the chance to just be mum and dad in a place we feel really safe.”