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Doctors told Hannah Murphy, 39, as she and her husband Chris Murphy, 37, that their daughter Molly would never walk or talk and would only live for a very short time
Daredevil Molly Murphy is “a total “thrill seeker” who is at her happiest paddleboarding or surfing in the sea.
If she’s knocked off by a powerful wave, she “bobs up again like a fish” – all giggles and smiles.
This is all the more incredible, according to her mum, Hannah Murphy, 39, as she and her husband Chris Murphy, 37, were told Molly would never walk or talk and would only live for a very short time.
The NHS commissioning manager says: “Molly is a non-stop smiler and has a real belly laugh when she finds something funny. She absolutely loves the sea and sledging and go-karting. Anything with a hint of danger and she’s there!”
Just weeks after Molly, of Barton-on-Sea, Hampshire, was born, she was diagnosed with PDH – Pyruvate dehydrogenase deficiency. It falls under the umbrella of Mitochondrial genetic diseases – awareness of which will be raised on Saturday, when landmarks around the globe will be lit up as part of international “Light Up for Mito” day.
Causing a build up of lactic acid in the body, which can be life-threatening and leads to a variety of neurological problems, PDH sufferers can have delayed physical and mental development.
Yet Hannah’s “textbook perfect” pregnancy gave no hint that Molly – born weighing 6lb 6oz on 20 May 2020 – had PDH, diagnosed in only 30 to 50 children a year in the UK.
She says: “She had a bit of jaundice, but otherwise seemed fine. We couldn’t wait to take her home to the beautiful nursery we had created.”
Within days, Hannah feared something was very wrong, after noticing Molly making tiny movements with her arms.
She says: “It was like she was doing tiny little circles with her arms. It was so subtle my midwife thought there was nothing wrong.
“As the days went on, something just didn’t feel right. She struggled to breastfeed, and I noticed that as well as the funny circular movements, she was also making little jerking ones.”
After five days at home, Hannah returned to the Ashurst Birthing Centre, in the New Forest, where Molly was born, for her to be checked over.
“They couldn’t find anything amiss, but I still couldn’t shake the feeling she wasn’t well, so we decided to go to the Princess Anne maternity hospital,” she adds.
“We stood in a corridor waiting for ages to be seen, I was getting very upset and then this consultant who was on his way to see another patient came past. He looked at Molly and he literally grabbed her from my arms then ran off with her.
“He took her to a room. Medics arrived from everywhere and started frantically working on Molly while we were taken to another room. Then a consultant came in and said Molly was very unwell. The little movements she had been making were actually seizures.
“They had managed to stabilise her, and she was being taken to ICU. When we saw her next, she had wires coming out of everywhere. It was Covid time so we weren’t allowed to stay with her and going home without her was just hideous.”
Copious tests and scans performed over three weeks were clear, leading doctors to suggest genetic testing.
Allowed home, Molly seemed to improve – making what happened next even more shattering.
Hannah explains: “We had gone back for the test results and as I held Molly in my arms the doctor told us she had this genetic condition for which there was no cure, and that the prognosis was very poor.
“He said Molly would never talk or walk and probably only live for a short time. Then we were given a leaflet about PDH and shown the door.
“We felt so utterly helpless.
As the babies of parents they had befriended during the pregnancy posted pictures on social media of their newborns smashing their milestones, Molly couldn’t even hold her head up.
“It felt so isolating,” Hannah admits.
But everything changed when they discovered the Freya Foundation – a charity set up by the mother of Freya Gilbert who also has PDH.
Hannah, who now has a son, Archie, who does not have any health problems, says: “That first phone call with Freya’s mum Kelly was really the moment things changed for me and Chris.
“She was just so positive. She told me Freya was really enjoying life. She did all sorts – Brownies, swimming, school. She said Freya, who is now 13, had a good quality of life. It was just the sort of hope we needed.
“I started to realise that Molly was really making the effort to do things and that her cognition was actually very good. She was very determined. If she tried sitting up and toppled over, she just tried again and again. She’s been like that with everything.
“She can now crawl, she says a few words, but communicates well using Makaton sign language and she is taking steps in her walker.
“She has a big personality, is very sociable and absolutely loves being with other children.
“She also loves sports. She comes paddleboarding with me when I go and she can surf using a surfboard with a specially adapted seat.”
And Moly, who follows a strict low carb, high fat Keto diet to give her energy, is loving life at Forest Park special school, where she started this month.
Hannah, who raised over £5,000 for the Freya Foundation by running the London Marathon, says: “We are so proud of her.
“Molly’s consultant is always amazed at just how well she is doing when we take her in.”
“Doctors don’t know exactly what her prognosis is, but Molly is still progressing and learning new skills, so we are hopeful for the future.”
For more information on PDH click here.
