Laura: Mum on a Mission
- Blog: www.mumoam.co.uk
- Facebook: www.facebook.com/mumoam
- Twitter: www.twitter.com/mumsmissions
- Instagram: www.instagram.com/themumonamission
Charlie's Altered Life
Hi I’m Charlie and I blog at www.ouralteredlife.com about life with my twin boys. When they were born we were told that the left-hand side of Harrys face had never developed. He has no eye, eye socket, nostril or ear. He also has a short jaw.
We had no idea about his rare condition, Goldenhar syndrome, and so to say we were shocked is an understatement. The guilt overwhelmed me and over the next few years I imploded behind a painted smile as my mental health deteriorated and my marriage crumbled. When Harry was three, he was also diagnosed with autism and is non-verbal, so you can imagine that life is as challenging as it is rewarding at times.
His brother Oliver is unaffected by the syndrome but he does struggle with anxiety. Please rest assured that the blog is not a hotspot of whinging and depression, more the honest and often humorous side of a life less ordinary.
Through my blogs I hope to reach other parents who have found themselves living 'an altered life' and reassure those at the start of their journey that while, admittedly, it’s a tough roller-coaster, the view from the top can be amazing! I really hope you enjoy the blogs and join us on the journey.
Tania's note: *Charlie is soon publishing a book that we're going to be featuring with a fab giveaway when it's out!
Find me online:
- My Altered Life blog: www.ouralteredlife.com
- Facebook: https://www.facebook.com/ouralteredlife/
- Instagram: https://www.instagram.com/ouralteredlife/
- Twitter: https://twitter.com/ouralteredlife
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
Latest posts by Tania Tirraoro (see all)
- SEND Tribunal trial extended – but it needs more than just time to be a success - November 5, 2019
- Launching the SEND Community Alliance: An independent campaign group - November 1, 2019
- When is a significant injustice to a disabled child, not a significant injustice? - October 29, 2019