We’d received shocking news about our baby girl and we feared the worst. But she was about to surprise us all. By Hannah Murphy, 39, of Barton-on-Sea, Hants
Gazing at the little bundle in my arms, I didn’t think it was possible to feel happier.
After a textbook pregnancy, my daughter Molly was born on time and my husband Chris and I were in a bubble of newborn bliss.
But within days, Molly was struggling to breastfeed and when I noticed her little arms and legs twitching slightly, we took her to A&E.
As we stood in a busy hospital corridor, a consultant went to hurry past, then stopped and stared at Molly.
‘Can I take her?’ he asked.
We followed as he took her for tests, then told us, ‘She’s having small seizures.’
She was taken to intensive care where genetic tests revealed Molly had pyruvate dehydrogenase deficiency (PDH). It was an extremely rare mitochondrial disease in which lactic acid built up in the body causing both neurological and developmental delays.
‘She may never walk or talk,’ the doctor said.
There was even a chance she might not live past her toddler years.
Looking at our perfect baby girl, it was impossible to believe something was wrong.
Molly was put on a specialist low-carb, high-fat ketogenic diet to help her process food into ketones energy rather than carbohydrates – something her body struggled to do.
It was hoped that would stop her seizures and give her the energy to develop.
But, sitting with her
that night, we felt lost
and helpless.
I remembered a leaflet the hospital staff had given us for a charity called The Freya Foundation, which helped PDH sufferers and their families.
I got in touch and discovered a community of supportive and hopeful parents, who helped us feel less alone.
Molly was a fighter too. When she tried and failed to sit up, she just kept trying.
‘Go on, Molly Moo,’ I’d say.
She loved swimming and being at the beach, so as she got older, I started taking her paddleboarding and surfing with me. Strapped into a special chair, she loved gliding through the waves.
Molly’s five now and doing so well. We have a little boy, Archie, too.
We continue to receive help and support from The Freya Foundation and another charity called The Lily Foundation and Chris is running the London Marathon for them this year.
Molly’s defying the odds and has learnt how to crawl and take a few steps in
her walker. Plus she can communicate using Makaton and a few words.
Although we know Molly’s condition may progress over time, we’re determined to give her the best life possible.
• To support Chris, search ‘Christopher Murphy The Lily Foundation’ on justgiving.com