A boy who has suffered from mobility issues since birth left wedding guests in tears as he walked his mum down the aisle to give her away on her big day.
Frankie Penfold, 10, from Weston-super-Mare, North Somerset, was born with SUCLA-2 mitochondrial depletion syndrome – an inherited condition that affects the early development of the brain.
Only 60 people in Britain have been reported to have the condition.
Frankie’s symptoms include being slightly deaf, being unable to hold his head up and being unable to walk.
His parents, Hannah and Tom, both 32, were told by doctors that Frankie would not live beyond his teenage years, but they always had big dreams for their son.
Since their engagement, Hannah’s dream has been 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 specialized machines with harnesses to be able to give his mother away.
When the special day arrived on April 8, 2023, her wish finally came true.
Frankie trained for five years to walk down the aisle with his mother
Hannah described the moment: ‘There wasn’t a dry eye in the house – I’ll never forget that moment for the rest of my life’
Hannah described the moment: ‘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 and my dad’s.
“People were laughing and crying and clapping all the time.
“It felt like each of those clips were precious memories – the achievement of what Frankie did 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 operations manager, to believe he was mildly deaf.
“His hearing tests showed he had mild hearing loss,” Hannah said.
‘We have accepted it; we thought it was something we could handle.”
Tom burst into tears as soon as he saw Hannah walking down the aisle with her dad and Frankie
Frankie’s parents were told 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 at four months old, Frankie wasn’t meeting any of his milestones, such as holding his head up or sitting up straight.
At five months old, Hannah and Tom suspected that Frankie had cerebral palsy, and they began the lengthy diagnosis process.
The baby had to undergo blood tests, occupational therapy and physical therapy and was finally diagnosed just before his first birthday.
Frankie was examined by a professor, who specified that he had the SUCRA-2 type, which affects brain and muscle development from birth.
After genetic testing, it was revealed that 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 falling apart.
“It was truly heartbreaking and something I will never get over.”
Frankie started having sessions on various physiotherapy machines at Gympanzees, a disability support organization based in Bristol
The couple were told that Frankie would never be able to sit up, hold his head up, crawl or walk – and that he would only live until his teenage years.
Hannah said: ‘It was extremely eye-opening.
“No matter how much you try to live a normal life, there are always barriers.”
The couple have tried to involve Frankie as much as possible in the same activities as his siblings, Penelope, six, and Teddy, four.
This led Hannah to realize that she wanted Frankie to play a role in their wedding and walk her down the aisle – as his brother and sister would do as well.
Frankie started having sessions on various physiotherapy machines at Gympanzees, a disability support organization based in Bristol.
His favorite was a machine called the Upsy, which helps him stand up straight, hold his head up and walk, assisted by an adult.
Recalling the first time Frankie used the Upsy, Hannah said, “His eyes lit up.
“A child in the device can bear weight and feel the use of their legs when a harness is attached.”
Frankie’s favorite machine was the Upsy, which helps him stand up, hold his head up and walk, assisted by an adult
Frankie trained on the Upsy for five years and on Hannah and Tom’s wedding day he was able to walk down the aisle with his mother, followed by his siblings Penelope and Teddy.
“He worked so hard and on my wedding day in 2023 he did 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.”