A little boy who has suffered with his mobility since birth left wedding guests in tears when he managed to walk his mother down the aisle on her big day to give her away.
Frankie Penfold, 10, from Weston-super-Mare, North Somerset, was born with SUCLA-2 mitochondrial depletion syndrome – an inherited disorder which affects the early development of the brain.
Only 60 people in the UK have been reported to have the condition.
Frankie’s symptoms include being mildly deaf, not being able to hold his head up, and not being able to walk.
His parents, Hannah and Tom, both 32, were told by doctors that Frankie would not live past his teenage years – but they have always had big dreams for their little boy.
Since their engagement, it has been Hannah’s dream to be walked down the aisle by both her father and her beloved son. It soon became young Frankie’s dream too.
With the help of physiotherapists, Frankie trained for five years on specialist machines with harnesses to be able to give his mother away.
When the special day rolled around on April 8, 2023, her wish finally came true.
Frankie trained for five years to be able to walk his mother down the aisle
Describing the moment, Hannah said: ‘There wasn’t a dry eye in the house – I’ll never forget that moment, for the rest of my life’
Describing the moment, Hannah said: ‘There wasn’t a dry eye in the house – I’ll never forget that moment, for the rest of my life.
‘It wasn’t just mine and Frankie’s dream, it was Tom’s, and my dad’s.
‘People were smiling and crying and clapping the whole time.
‘It felt like each of those clips were precious memories – the achievement of what Frankie was doing was so much.’
Frankie didn’t start showing signs of mitochondrial depletion syndrome until after he was born.
Within his first month, he failed multiple hearing tests – leading Hannah, a fundraising assistant, and Tom, a senior operational manager, to think he was mildly deaf.
‘His hearing tests came back indicating he had mild hearing loss,’ Hannah said.
‘We accepted it; we thought it was something we could cope with.’
Tom burst into tears as soon as he saw Hannah walking down the aisle with her father and Frankie
Frankie’s parents were told that he would never be able to sit up, hold his head up, crawl or walk – and he was only expected to live until his teenage years
But by four months old, Frankie wasn’t hitting any of his milestones – like holding his head up or sitting up.
At five months, Hannah and Tom suspected Frankie had cerebral palsy – and began the lengthy diagnosis process.
The baby had to undergo blood tests, occupational therapy and physiotherapy, and he eventually received a diagnosis just before his first birthday.
Frankie was examined by a professor, who specified he had the SUCRA-2 type – which affects brain and muscle development from birth.
After genetic testing, it was revealed Hannah and Tom were both affected by a faulty gene.
‘I’d never heard of mitochondrial disease,’ Hannah said.
‘I wasn’t prepared for it, and it felt like my world was coming crashing down.
‘It was really heartbreaking, and something I’ll never get over.’
Frankie started having sessions on different physiotherapy machines at Gympanzees – a disability support organisation based in Bristol
The couple were told Frankie would never be able to sit up, hold his head up, crawl or walk – and he was only expected to live until his teenage years.
Hannah said: ‘It was massively eye-opening.
‘As much as you try to live a normal life, there are barriers up, all the time.’
The couple have tried to include Frankie in the same activities as his siblings, Penelope, six, and Teddy, four, as much as they can.
This led Hannah to realising she wanted Frankie to play a part in their wedding and walk her down the aisle – as his brother and sister would be doing too.
Frankie started having sessions on different physiotherapy machines at Gympanzees – a disability support organisation based in Bristol.
His favourite was a machine called the Upsy which helps him stand upright, keep his head up and walk, aided by an adult.
Remembering the first time Frankie used the Upsy, Hannah said: ‘His eyes just beamed.
‘A child in the device is able to weight-bear and feel the use of their legs with a harness attached.’
Frankie’s favourite machine was a called the Upsy which helps him stand upright, keep his head up and walk, aided by an adult
Frankie spent five years training on the Upsy and on Hannah and Tom’s wedding day, he was able to walk his mum down the aisle, followed by his siblings Penelope and Teddy.
‘He worked so hard, and on my wedding day in 2023, he managed to do it,’ Hannah said.
‘Frankie wasn’t nervous – he’s such a people person.
‘I can’t put into words how much it meant – all the struggle, all the love, all the joy.’
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