Kamila

Meet Kamila...

Kamila shares her journey with fast-progressing MND and reflects on the rapid changes to her life, from an active lifestyle and a dream wedding in Poland to adapting her home and relying on carers. Kamila praises the vital support from the MND Association including equipment, financial help and emotional guidance. Determined to give back, she uses social media and fundraising to educate others about MND, encouraging people to focus on special moments, plan ahead, and never face the condition alone.

Kamila shared her story with us August 2025.

Life before MND

"I was in the process of putting final touches to our wedding plans."

My name is Kamila, and I was diagnosed with motor neurone disease in July 2023. I wanted to share my story and my journey with to let you know you never alone. 

Life before MND was pretty perfect and I had loads to look forward to and I was in the process of putting final touches to our wedding plans. As I am Polish, we decided to have our wedding in Poland near my family home. My partner absolutely loved the location because it’s situated near mountains and beautiful scenery. Between flying back and forth to Poland, work, and family life there was no time for getting poorly. 

My favourite thing to do in my spare time was gardening or hiking as we live in the beautiful High Peak in Derbyshire, so when I received my MND diagnosis, I was devastated at the idea I would not be able to go out and explore in the same way.  I was working as a supervisor for a fine dining restaurant, and as the nice weather was approaching work was becoming more demanding. I absolutely loved my job, especially interacting with different guests each day. I always thrived in busy environments, so hospitality was perfect for me. 

We got married on 23 May 2025 and I couldn't have asked for a more perfect day with all my family and friends together, supporting and celebrating. After our wedding we made plans to build our own summer house in Poland and to try for a baby as we had one each from previous relationships, but we wanted to unite our family even more and hopefully welcome an additional family member.   

Early symptoms

"I carried on and tried to put it to the back of my mind as our wedding was approaching fast."

I first started experiencing symptoms in mid-April 2023. Thinking about it now, I’m sure there were other warning signs I may have ignored or explained away. I’m not someone who visits the doctors often – usually waiting until I’m bordering on desperate. It started with my right leg dragging a bit, then symptoms started to progress, and I was struggling when walking up or down stairs. I started losing my balance when bending or trying to kneel down. At the time, I didn’t pay much attention to it and blamed it on a fall I’d had earlier at work. I was thinking it was most likely something

 pressing on my nerves and I’d get it checked out later. After a few more days, I noticed my right arm getting weaker too. Still, I carried on and tried to put it to the back of my mind as our wedding was approaching fast and we had family and friends coming from all over. I remember saying to my mum on my wedding day, "please hold me so I don't trip over”. 

After all excitement of our wedding day, it was time to go home and work. I managed two days at work, but I was absolutely run down. Come Monday morning, as I was getting dressed, I fell backwards and was struggling to get up. I called my husband, and we agreed it was time to find out what was happening to me.

Diagnosis

"I wanted to get home straight away and organise life for my family."

After a quick check by my GP, I was sent straight to hospital and after over a month of seeing different doctors and having every possible test done, I was finally told I have MND and unfortunately, I have the fast-progressing variation. By September, it wasn't safe for me to stay on my own and by December I was in a wheelchair. 

When I was told I have MND, my husband completely broke down and I went into panic mode. I wanted to get home straight away and organise life for my family, put everything in place and start adapting our home so I could be independent for as long as possible. I did not let myself to get overwhelmed by my diagnosis until later when everything was done and there was nothing else to concentrate on. I think that was the moment it hit me, and I never felt more alone even with everyone around me.

The impact of MND

"Your home slowly but surely transfers into your caring facility, full of medication and medical equipment."

I was really proud of my appearance. I took after my parents as they always made sure me and my siblings looked presentable and clean – even with seven of us to look after! So it upset me when I started losing the ability to look after my appearance. I felt like I was losing my identity. 

But the hardest thing is watching your loved ones struggling, watching you waste away front of them and there is nothing you can do about it. As a parent, I was always involved in my son and my stepdaughter’s life, but now I can't even comfort my children when they need me. The dynamic at home has changed for everyone. Unfortunately you can't avoid it because suddenly you start having strangers in and out of your home and your home slowly but surely transfers into your caring facility, full of medication and medical equipment. 

Writing this today, I am completely dependent on my carers, non-vocal and using eye gaze to communicate. We are so lucky with people who are caring for me. They have become part of our family, and not only do they look after me, but they look after everyone at home to. I believe good and kindness always comes back and people you crossed paths with will be there for you when you need it.

Association support

"I was more than grateful when the MND Association helped with those too."

I was introduced to the MND Association by my occupational therapist who is one the most dedicated people I’ve ever met. She helped me with several forms and sent them on my behalf. I have received help with getting a specialised bed, a rise and recline chair, and financial help to support the children with school equipment and Christmas gifts. MND is an expensive illness and if you choose to have private treatments everything adds up, so I was more than grateful when the MND Association helped with those too. 

They help me have a different outlook and I decided I wanted to contribute and give back a little. I started sharing my story on social media and give updates as my MND progresses. I realised how little people know about MND – I was one of those people once – so I made it my personal goal help educate others and raise awareness. My friends and family helped with raising money last year by taking part in the Association’s running challenge, and this year I have set up a fundraiser for my birthday. Every penny raised gives me hope that we are one step closer to finding treatment and hopefully, one day, a cure.

Advice to others 

"We cry, we laugh and most importantly we make memories."

First of all allow yourself to grieve, you just received some of the hardest news you’ll ever hear. Some people call it a life sentence, and it can feel like that when you’re diagnosed. Everyone responds differently so allow yourself to feel whatever you’re feeling, but please don’t give up. There is always light at the end of tunnel. It might not feel like it at the moment, and this cruel illness will test you and your loved ones in every possible way, but please try to concentrate on the good days and those special little moments. My safe space is being with all my siblings, my beautiful mum, my kids, and my husband. We cry, we laugh, and most importantly we make memories. 

Make sure you’re always a few steps ahead. No one will know your body better than yourself so make sure you listen to it. Every one of us will progress in different ways, but make sure you are prepared for it and have appropriate equipment in place. 

And lastly, talk to others and share your experiences. Reach out online to other people with MND if you need help or a bit of advice. No one should deal with it alone.