Heartbroken couple split up to spare her pain of watching his muscular dystrophy take over

Heartbroken couple split up to spare her pain of watching his muscular dystrophy take over

 

When Keith Royal walked into a science class at college, he noticed a beautiful redhead sitting in his seat.

When he told Jade she had pinched his spot, she wasn’t sure if he was joking – so told him to go away.

The pair instantly became great friends, getting closer over the next year until their classmates teased them about getting together.

One day, Jade, now 22, asked Keith, 31, about his arm – and he trusted her enough to tell her about his increasingly debilitating symptoms, caused by facioscapulohumeral muscular dystrophy (FSHD), a genetic condition which breaks down the muscles.

In Marcy 2016, they finally shared their first kiss and became a couple, welcoming their beautiful baby boy, Nathaniel, in December 2018.

But just weeks later, Keith suddenly lost the use of his legs and his condition quickly worsened.

No longer able to bear the impact his deteriorating health was having on Jade, Keith had a long, heartfelt discussion with her and they agreed to separate.

Their love remains as strong as ever, but the decision was mutual and, while it is heartbreaking, they both believe it to be right.

Keith, a former analytical scientist, of Basingstoke, Hampshire, said: “Knowing my capability as a supportive partner and an active father were diminishing quickly brought out a sense of guilt.

“The point comes when you must wonder what it is doing to those you love.”

Living alone means Keith, who has another son, Connor, nine, from a previous relationship, qualifies for more care and Jade, of Popley, Hampshire, can start making plans for her own life.

Keith said: “Jade and I love one another, but we didn’t want to keep pushing and pushing until the relationship turned toxic.

“There are no words to describe the sacrifices she made for me. I wanted to spend the rest of my life with her, but I love her enough to let her go.”

Still co-parenting Nathaniel with Keith, health sciences and disease control student Jade believes that, while extremely hard, it means they’ve got control of their lives back.

She said: “We know we made the right decision. Neither of us is trying to carry two worlds on our backs anymore and drowning under the weight of them.

“Coming up with the decision to separate, after everything we’d been through, actually gave us the power over our situation for a change. We weren’t waiting on a form, or an assessment, or any red tape – it was us deciding how to live our own lives.”

A sporty youngster, Keith liked keeping fit by running, rollerblading and weightlifting when, nearing his 15th birthday, it started becoming increasingly difficult to work out, with weights that he had once lifted with ease suddenly seeming heavy.

At first, he thought little of it, but a family member pointed out that, considering how much he worked out, his arms were incongruously skinny compared to the rest of his body.

Concerned, he consulted his GP – the start of months spent seeing various specialists, all of whom seemed baffled, until eventually, he was sent to a neurologist in 2006, aged 16.

He said: “Within 15 minutes, I had a diagnosis. What shocked me more than anything was the speed.

“It’s funny – even years later, I remember so much about that day. I can remember my appointment was at 2:15pm on a Tuesday, I can remember that the doctor had a blue polka dot dress on.

“I can remember that the hallway outside was loud, but the second she started explaining the basics of what was going to happen to me, I couldn’t hear anything else.”

Keith was told that his condition, which has been caused by a genetic mutation and is not inherited from any of his family members, would see his facial, shoulder, back and arm muscles progressively break down over time.

He continued: “At the time, I felt pretty fit and healthy, so it didn’t seem all that life-changing. I was a teenage boy, I just wanted to go to college and see my mates.

“I could still do those things, so actually felt quite content.”

But it would not be long until the reality of life with FSHD – which, being genetic, comes with the possibility of being passed on to his children, meaning he can have them tested if he wishes – hit home for Keith.

By 17, he could no longer keep up with the demands of his part-time engineering job.

With doctors advising that such a physical career may not be practical for him, he had no choice but to rethink his entire future.

“It was frustrating, as I didn’t want my condition to speak for me,” he said. “I wanted employers to judge me on what I could do, not what I had.”

Keith continued to live as normally as possibly – meeting and marrying his ex, who he prefers not to name, and having Connor together, as well as starting a college course in science and forensics.

But by 2012, shortly after becoming a father, Keith’s condition took a sudden turn for the worse, causing him to have frequent falls.

He explained: “They’d happen around two or three times a week. My legs would just give way, out of nowhere.”

After a couple of months, Keith was assessed and doctors confirmed he had foot drop – a muscle weakness that makes it difficult to lift the front part of the foot and toes – and gave him leg splints for support.

Around the same time, he discovered that he had a mutated form of his condition, meaning it would progress faster than anticipated.

“I couldn’t process it,” he said. “I knew I had less time being able-bodied than most, so I simply didn’t have the time to stand around and examine my feelings.”

In July 2013, Keith and his ex-partner parted and a few months later he was forced to take a break from his college course because of debilitating pain attacks, during which his stomach muscles would convulse, resulting in excruciating spasms and a burning sensation.

“They weren’t typical of my type of muscular dystrophy, so nobody was expecting them,” he said.

“There are no words to describe them. The pain was so severe I was hospitalised on 38 separate occasions.

“I was on more painkillers and tablets than you’ve ever seen and really not in a good state of mind.”

Finally, in September 2015, Keith’s condition stabilised enough for him to return to college for the next year of his course.

Walking in to class on his first day, he spotted a mystery redhead sitting in his usual seat – Jade.

She recalled: “I’d only just joined college so was nervous as hell. Keith came over to me and told me I was in his seat.

“I couldn’t tell if he was joking or not, but I promptly told him where to go.”

It was the beginning of a beautiful friendship.

Keith laughed: “I never did get my chair back. I sat next to Jade anyway and, as we got chatting, we realised we had a lot in common.

“By the end of the day, I knew I’d made a friend.”

At first, Keith did not tell any of his fellow students about his condition, only coming clean after almost a year when one asked him about his arms.

By then, he and Jade were firm friends, so she was not fazed.

With her being nine years younger than him, they never thought their relationship would be anything more than platonic.

But, over time, their classmates noticed there was something between them and would tease them, saying, ‘Will you two just get together already?’

Then, in early 2016, Jade realised she was developing feelings for Keith when he suffered a horrifying pain attack in front of her, resulting in an ambulance being called.

“He was practically unconscious, writhing around in agony,” she recalled.

“An ambulance was called, but the road outside was really busy. I don’t know what came over me – it was this strange protective urge – but I ran outside and was literally smacking the cars, shouting at them to let the paramedics through.

“I got into the ambulance with him and stroked his hair all the way to hospital. In that moment, I knew I couldn’t live without him and that I could never let him go through something like that alone again.”

It was not until March 2016, as they watched a film together at his house that she leaned over and kissed him.

“I immediately thought, ‘Oh my god, I’ve crossed the line,’” she said. “But that night, we sat up for five-and-a-half hours talking about how it was all going to work – both the age difference and the FSHD.

“We eventually agreed that there was something between us and we ought to give it a go.”

In April 2018, Jade found out she was pregnant, despite doctors having warned her that, because she has two gynaecological conditions, polycystic ovary syndrome and endometriosis – both of which can affect fertility – her chances of having a child naturally were very slim.

Jade recalled: “I’d always wanted to be a mum, but had been told by doctors it was very unlikely to happen for me.

“I can’t explain it, but I just woke up feeling odd. I happened to have a test so decided to take it – and it was positive.

“I called Keith in and he was in absolute shock. We went straight to the nearest pharmacy and bought one of every pregnancy test they had, to be sure. They all said the same thing – I was pregnant.”

Little Nathaniel arrived happy and healthy on 21 December, 2018.

But the couple barely had time to enjoy being new parents before,  just four weeks later, Keith suddenly lost the use of his legs and was hospitalised.

Trapped on a ward away from his family – and missing out on bonding with his boy – he felt powerless.

Jade explained: “We’d also just moved house and I had raging postnatal depression, so it was an incredibly difficult time.

“Nobody knew why Keith’s legs had stopped working. I’d be on the phone to him in hospital every night in floods of tears. We both felt so helpless and completely alone in what we were going through. It was never-ending.”

Thankfully, Jade contacted the charity Muscular Dystrophy UK (MDUK), who helped secure a grant to pay for adaptations to her home, so that Keith could leave hospital after five weeks.

She continued: “Without that, it wouldn’t have been safe for him to come home, so who knows how long he’d have been in hospital.

“MDUK were incredible. They told me about so many things I’d otherwise have had no idea about.

“If I didn’t have them, with the state I was in, I genuinely don’t know how I’d have got through.”

Since then, the couple have both suffered hugely with their mental health as a result of Keith’s condition.

Keith, who now needs a mobility scooter and walking frame to get around, and is waiting for a wheelchair assessment, has had to cope with watching his body deteriorate, while Jade has put her entire future on hold to care for him.

Eventually, they decided that the best thing for their relationship was, in fact, to end it.

After parting ways during the first coronavirus lockdown earlier this year, although the love between them has not diminished, they both say they are confident they made the right decision.

“I loved being there for Keith, but I wasn’t trained to help him with everything he needs,” said Jade.

“My own life and ambitions were put on the backburner so that I could be his one-woman care team.

“But now, I have the chance to achieve some of the things I want and continue to receive treatment for my own medical problems.”

And Keith has given her his heartfelt blessing.

He said: “Jade is now in her own home, pursuing her career and continuing to be an incredible mum.

“That would have been impossible had she continued caring for me daily.

“Her future very quickly vanished when she had to be everything to me. Seeing her not having those opportunities was really tough – but she’s her own person, and always has been. She deserves to live her life and achieve her ambitions.”

By sharing their story, Jade and Keith, who still video call each other every day, want to thank MDUK for helping them in their hour of need – at a time where they felt the world had turned its back on them – and to raise awareness of the condition.

Muscular Dystrophy UK is the charity supporting over 70,000 people in the UK living with over 60 types of muscle-wasting conditions.

If you are affected by a muscle-wasting condition and would like information or support, their helpline can be reached on 0800 652 6352 or at  info@musculardystrophyuk.org.

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