Our arthrogryposis hero

Firstly, a little about us and Ethan. We are the very proud parents of a gorgeous little boy named Ethan. While we were pregnant, we found out our baby had Arthrogryposis. The medical advice was to terminate our baby because the arthrogryposis was so severe that he would probably die at birth. Having decided that life and death was not our choice and that we would live in faith for a miracle our gorgeous boy came into the world on the 16th Novemeber 2018. You can read more about our pregnancy journey in our very first blog post here

We do not claim to be experts and do not claim to have all the answers, and we certainly do not want to force our views or opinions on others. We thought it might be helpful for others to hear about our journey and so we have started this arthrogryposis blog. We write this as parents of a child with a disability, but also as faith filled Christians who desire to bring up Ethan in the way that God would want, while also pursuing further supernatural miracles.

Recent Posts

As Ethan grows up, and as we take this journey we shall endeavour to keep you up to date with all our musings. Please feel free to read and share your thoughts.

No mistakes here...Just different...

By Laura on May 28, 2019

A year ago, I remember vividly sitting here, on holiday, a week after finding out the doctors fatal prognosis for Ethan. We were devastated. We sat here crying with my brother and sister-in-law, in total dispair. Then I remember thinking for he first time, what if our baby does survive, but he can’t move his arms or legs? How will he walk? How will he eat? Play? Draw? And so many more things.

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Mountains become molehills - one year on

By Jon on May 22, 2019

It’s amazing what difference a year can make. Today marks the one year anniversary that we were told our baby would die at birth. It was one of the saddest days of our lives, but a day that has led us on the most incredible journey. Rather than look back sadly on this day, we have decided that from now on the 22nd of May should be a celebration. It is Happy Ethan Day!

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Flip it upside down

By Laura on May 15, 2019

It’s so easy to worry isn’t it? All parents worry about their children, don’t they? I know my Mum and Dad still worry about me, even though I’m now 34. Having a child with a disability, I think, probably comes with even greater worry, or maybe just different worries. My worries aren’t necessarily about right now - they’re more about Ethan’s future and revolve so much around what he will be able to do independently.

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Finding our normal - casts

By Laura on March 17, 2019

It’s been 8 weeks since I sat nervously, but excitedly, the night before Ethan had his first set of casts. He was to begin the Ponseti procedure, which is primarily used to correct talipes, more commonly known as clubfoot, but for Ethan it would also help to correct the extensive contractures of his knees as well as his feet. He would begin the process of serial casting the next day and would have to have the casts changed once to twice a week.

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