When doctors gave me a devastating diagnosis, I feared I wouldn’t see my boys grow up. But then something amazing happened. By Suzanne Phillips, 57
As I loaded the washing machine, I called upstairs to my sons.
‘Breakfast time!’ I yelled.
Moments later, Lance, nine, and Aron, seven, clattered into the kitchen.
With their dad Robin already at work, it was up to me get them off to school on time.
Robin and I were in the process of separating, but he was still living with us until he got himself sorted.
It had been amicable, and we were both keen to keep things as normal as we could for the boys.
After the school run, I flicked the kettle on for a quick brew before I did the housework.
As I scooped a spoonful of loose tea, I noticed my right arm felt weaker than usual.
‘I must’ve slept on it funny,’ I told myself.
But when it didn’t improve, I made an appointment with GP, who referred me for hospital tests.
When the appointment letter arrived, I was surprised to find they wanted me in for five nights.
‘Mummy has to go away for a few days.’
‘Where are you going?’ Lance asked.
‘To the hospital for some tests, but I’ll be fine,’ I said as I hugged them both.
While I was there, I had blood tests and MRI scans. They removed muscle from my arm and stuck needles into my throat and chest.
When I was called back for the results a few months later, Mum came with me.
We sat down with the consultant and she said: ‘You have motor neurone disease.’
I didn’t know what it was, but Mum clearly did, because I saw the shock on her face.
The consultant explained it was an incurable condition that affected the brain and nerves, causing weakness that got worse over time.
Symptoms included muscle weakness, slurred speech and difficulty swallowing.
'I want us to live for now'
‘But it’s manageable?’ I asked, struggling to take it all in.
‘Unfortunately, most people diagnosed with motor neurone disease only live between two and five years,’ the doctor said.
My first thought was my boys. If she was right, I wasn’t going to see them grow up.
After the doctor prescribed some medication that would slow the progression of the disease, we left the office in shock.
Mum wrapped her arms around me, and in tears she said: ‘Oh, love, I don’t know what to say.’
‘Me neither,’ I replied, blankly. ‘But I have to pick the boys up from school.’
That journey was a total blur as everything the doctor had said spun around my head.
When the boys came out, I ran over and hugged them tightly.
‘I love you very much,’ I told them.
Later, I told Robin about my diagnosis.
‘Oh, Suzanne, I’m sorry,’ he said, hugging me.
I knew he’d be there for me and boys, no matter what.
Over the next months, I was in pieces. I’d ring Mum three or four times for reassurance.
‘Do not give up,’ she’d say. ‘You will overcome the odds, and see your boys grow up.’
A year on, the boys and I moved to Doncaster, South Yorkshire, to be closer to Mum.
As I was still mobile and able to look after myself, I still hadn’t told the boys I had MND.
But I knew I needed to explain it to them. So once we were settled, I sat them down.
‘Mummy’s fine now, but I might feel poorly soon,’ I told them, gently. ‘We’ll still have fun and take each day as it comes.’
They nodded, but they were still too young to really understand.
While I was still well, I made sure we lived life to the full and made lots of memories together.
I took them to Disney World, and wrote a children’s book so the boys had something I’d created to read when the worst happened.
My diagnosis robbed me of the luxury of planning too far ahead in case my condition declined, but I remained positive.
'I'm feeling really optimistic'
Then a year on, while I was visiting a friend, I met Lee and we hit it off.
The spark was instant, and as we chatted, I pushed all thoughts of MND out of my mind.
I didn’t want the condition to rule my life — or my heart.
‘Would you want to see each other again?’ Lee asked.
‘I’d love to,’ I said.
I was excited, but I knew when we met again I’d have to tell him. It wasn’t fair not to let him know.
So, on our first proper date, I said: ‘I’ve got something to tell you — I have motor neurone disease.’
I explained a bit about the condition. And although he was shocked, he listened carefully and kindly.
‘I will leave it up to you to decide if you want to see me again,’ I told him as we parted.
Thankfully, he wanted to keep seeing me.
‘I want us to live for now, not what may be,’ he said.
And after that, our relationship grew and we fell in love.
As the second anniversary of my diagnosis approached, I felt a sense of relief and appreciation.
‘I’ve still got three years to go, but I’m feeling optimistic!’ I told Lee.
But I continued to stay well, and before long, I was approaching five years without my symptoms having progressed too much.
By now, the boys were 12 and 14, and they had more of an understanding of MND.
And when the anniversary of my diagnosis arrived, I hugged them tight and said: ‘I did it!’
Although I tried not to project too much into the future, I found myself amazed as I was there to see my sons reach milestones I never thought I’d share with them, like passing their exams, leaving school and learning to drive.
With every special moment, I’d pinch myself to make sure it was actually happening.
The day my youngest son Aron graduated from university felt like a dream come true.
He wore his father’s gown, and I couldn’t stop my tears when he walked on stage to receive his degree.
I shouldn't be here, but I am, I kept thinking to myself. And I am so grateful.
Now, I’ve reached an astonishing 21 years since my diagnosis. My doctors think I’m a medical miracle to have survived so long.
My arms and legs are getting gradually weaker. I’m still mobile, but I fall occasionally. I struggle to pull tops over my head too.
But with each change in my ability, I adapt and work through it.
I often have survivor’s guilt when I see another person has died from MND, and I wish everyone could see another day.
But I feel incredibly grateful that I’ve seen my sons grow up.
Even if I end up in a wheelchair, I'll keep going the best I can. I’ll live for each day and never take anything for granted.