The story of Amelia and her Nemaline Journey.

About

Welcome to our blog.

Finding out that your child has a rare genetic disease completely changes your life, turns it upside down and takes you through every emotion possible. My name is Emily and up until last November my life was pretty normal. I married my wonderful husband Paul in 2017 and not long after our daughter Penelope was born. Our second daughter Amelia was born in 2019. Since Amelia’s birth we have been on a roller-coaster of a ride and still going through it now. This blog is about us navigating our way through to our new normal and how having a disabled child is truly a wonderful gift.

Contact

If you or anyone you know is going through the same journey and would like to share your experiences, if you need some advise or just someone to talk to please feel free to drop me an email. Equally if you are a brand or product who would like to get in touch with any help and support then feel free to contact:

esdobie@gmail.com