Hello

Hi I’m Emma and this is Dotty.

When Dotty was 3 weeks old our world turned upside down as she began to have what looked like multiple seizures a day. Initially she was treated for epilepsy but was later diagnosed with severe silent acid reflux (GERD). After 4 separate hospital stays, copious tests and a lot of trial and error when it came to her medication, we managed to get her condition under control from around the time she was 5 months old.

As time went on, it became clear that Reflux wasn’t the only thing at play as she wasn’t progressing as she should be. Over the course of the next two years, we saw numerous Consultants, Specialists, GPs, Dieticians, Paediatricians, Physiotherapists and Speech Therapists to try and get to the bottom of what was wrong. Eventually, in September 2016, at just over two and half years old, she was diagnosed with a genetic condition called STXBP1 by specialists at Great Ormond Street. It’s caused by a mutation of one of her genes (her STXBP1 gene to be exact) and can result in epilepsy, intellectual disability and other neurological problems. It’s not something we passed on to her, it just happened and it’s directly responsible for the delay in her development.

As you can imagine, becoming Dotty’s mother has been one hell of a baptism of fire and life has proved challenging most days since. But in spite of the difficulties, it’s a life full of love and respect, expertly organised around a beautiful little girl that I couldn’t be more proud of. I marvel at her strength and the effect she has on me. She’s changed me forever for the better and for that, I’m truly grateful. 

Mama Be Okay started as a safe place for me to ramble on about our experiences in the hope of connecting with others dealing with similar things. But more than that now, It’s helping me come to terms with what’s happened and embrace life as a special needs parent.

Dotty has given me a sense of purpose and something to say.
So here I am, saying all of it with my fingers crossed that it’ll make some of you laugh, cry and hopefully not die of boredom in the process.

I hope you enjoy it.

Em x


 

6 comments

  1. Anonymous

    Although it is heartbreaking to read and was to watch at the time, it is such a good blog. Your an amazing couple with an amazing, strong beautiful baby girl xx

  2. Emma

    Thank you, that’s lovely of you to say. Em x

  3. Anonymous

    This is such a lovely blog about your beautiful daughter who I see at Toad Hall ( I work in Poppies and the nursery linked your blog on their Facebook page)

  4. Emma

    Thank you! Really great to know people around her are reading along too. Thanks for your comment, Em x

  5. Anonymous

    I used to read your blog and wonder what this reflux thing was that caused so much trouble, but then when my second son was born with it, realised that it literally takes over your life!
    With that and Dotty’s genetic condition, you are really a supermum. When she is older, everyone is going to tell her how amazing you were.
    Thank you for writing so eloquently about your journey xxx

  6. Emma

    That’s really lovely of you to say. Thank you for following along and taking the time to comment, Em x

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