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| Heni happily playing with a toy |
Why Henibean?
As I mentioned in my introduction, I’m a mum to four children. My second eldest was a beautiful girl named Heni — or as I affectionately called her, Henibean. She was super cute and super special in more ways than I can count. Truly, a little miracle.
Heni was born with Edwards Syndrome (Trisomy 18 – full form), a rare and life-limiting genetic condition. The odds were never in her favour. Live birth prevalence is around 2.3 babies per 10,000 births, and only 9% of those diagnosed before birth survive to delivery. Most babies with Edwards Syndrome are sadly lost before they are born.
We were told she was “incompatible with life.” I was advised to terminate the pregnancy at 30 weeks by doctors at a well-known London hospital. The median survival for full Trisomy 18 was just 14 days, with 20% surviving to 3 months, and only 8% making it to one year.
And yet — Heni defied every statistic.
She lived to be 21 years old, and she passed away in 2016.
Our Little Miracle
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| Heni looking like she is playing the harp |
She looked like an angel playing the harp on her 8th birthday — a vision I’ll never forget. We called her “adventure girl”, especially in those early years when she had more energy. I still remember her tucked into her all-terrain buggy up at Tarn Hows in Cumbria, grinning like she owned the place.
Our journey with Heni was a rollercoaster of highs and lows that would churn the strongest stomachs. She required round-the-clock care and couldn’t do the everyday things we often take for granted. But she lit up every room with her smile and presence.
She truly embodied the phrase “love the one you’re with.” Her love for others was pure, fierce, and unconditional.
What She Taught Me
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| Adventure girl ! |
When I had tough days (and there were many), I would remind myself — at least I could leave the house, go for a walk, cry, breathe. Heni couldn’t just up and leave if she was frustrated or having a bad day. She was nonverbal, wheelchair-bound, often unwell… and yet, she smiled and was the happiest person I knew.
Of course, she had a mischievous side too. She pulled my hair, pinched my skin, slobbered all over me, and made the most outrageous sounds — somehow, even while on full-time oxygen! She tested every ounce of my patience and strength. She was the cause of many of my health issues and my deepest stress... and also the source of the most incredible love I’ve ever known.
She inspired growth, even when it was painful. She pushed me to search, to learn, to stretch beyond what I thought I was capable of. And through her, I experienced the kind of love that most people only read about.
Why This Blog Is Called Henibean
This blog is named after her — my original Henibean. I created it as a space to process, reflect, and share the lessons, challenges, and moments of deep grace that came from life with her.
Even though she is no longer physically here, her spirit lives on in every word, every post, every insight I continue to explore. She shaped the path I’m on .
So this space — this second Henibean — is my tribute to her.
A place to share what she taught me, and what I’m still learning:
how to hold grief and joy, how to heal through creativity, and how to keep showing up with heart, even in the face of it all.
If you want to learn more about Edwards Syndrome, I encourage you to visit:
Thank you for being here.
I hope you enjoy the pictures of Heni — she truly was one of a kind.
With love,
Jx
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| Heni with mum in the garden |
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