My name is Karen, I'm 47 and I gave birth to my beautiful daughter Gwen in August 2012. Back then, I was healthy, happy, and working hard at the Environment Agency and looking forward to my new life as a mum.

It was within a year of having Gwen I started to get pain in my left arm. My GP told me it was probably due to the way I held Gwen and that it would go. The pain never stopped, and at times I was completely unable to move my arm. I started to get other symptoms; my legs ached, I had severe insomnia and randomly I would not be able to move. I was sent for further tests and investigations and diagnosed with peripheral neuropathy.

Within two years, the symptoms got a lot worse and I was diagnosed with Parkinson's disease. I had to give up work, and it became almost impossible to do normal day-to-day activities. I cannot live independently as without medication I literally cannot move. Even on my good days, simple tasks like making a drink are near impossible, and some days I can't even hug my daughter Gwen. Life is incredibly hard and what breaks my heart the most is seeing the impact it is having on my family.

I have become progressively worse. The neurologists are shocked at how quickly I have deteriorated. They no longer think I have just Parkinson's, they now think it is Multiple System Atrophy (MSA-P). This is a much more aggressive life limiting disease which cannot be fully diagnosed until post mortem. Obviously, we are devastated.

At present there is no cure for either MSA-P or Parkinson's Disease, so as much as we're hoping for a miracle we must also be realistic. Our main aim is to keep Gwen's life as normal as possible for as long as possible. She is an amazing little girl.

Unfortunately, my home is not suitable for my needs as I need a single storey property. This is not within our reach financially, so we are making adaptations to my home which will enable me to continue living with my family for as long as possible.