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 that affects early brain development.
Only 60 people in the UK have been reported to suffer from this condition.
Frankie’s symptoms include being slightly deaf, not being able to hold his head up, and not being able to walk.
Doctors told his parents, Hannah and Tom, both 32, that Frankie would not live past his teenage years, but they have always had big dreams for their little one.
Since her engagement, Hannah’s dream has been to have her father and her beloved son walk her down the aisle. It soon became young Frankie’s dream too.
With the help of physical therapists, Frankie trained for five years on special machines with harnesses to give to his mother.
When the special day arrived on April 8, 2023, his 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 will 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 will 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 smiled, cried and applauded all the time.
“I felt like each of those clips were precious memories – the achievement of what Frankie was doing was huge.”
Frankie didn’t start showing signs of mitochondrial depletion syndrome until after he was born.
During the first month, he failed several hearing tests, leading Hannah, a fundraising assistant, and Tom, a senior operational manager, to think he was slightly deaf.
“His hearing tests indicated he had a mild hearing loss,” Hannah said.
‘We accept it; “We thought it was something we could deal with.”
Tom burst into tears as soon as he saw Hannah walking down the hallway 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 that he would only be expected to live into his teens.
But at four months, Frankie wasn’t achieving 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 long process of diagnosis.
The baby had to undergo blood tests, occupational therapy and physical therapy, and finally received a diagnosis just before his first birthday.
Frankie was examined by a teacher, 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 affected by a defective gene.
“I had never heard of mitochondrial diseases,” Hannah said.
“I wasn’t prepared for it and I felt like my world was collapsing.
“It was really heartbreaking and something I will never get over.”
Frankie began having sessions on different 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 was only expected to live into his teens.
Hannah said: ‘It was tremendously eye-opening.
“No matter how hard you try to live a normal life, barriers always arise.”
The couple has tried to include Frankie in the same activities as her siblings, Penelope, six, and Teddy, four, as much as they can.
This led Hannah to realize that she wanted Frankie to participate in her wedding and walk her down the aisle, as would her brother and sister.
Frankie began having sessions on different physiotherapy machines at Gympanzees, a disability support organization based in Bristol.
His favorite was a machine called Upsy that helps him stand upright, hold his head up and walk, assisted by an adult.
Recalling the first time Frankie used Upsy, Hannah said: “His eyes just sparkled.”
“A child in the device can bear weight and feel the use of their legs with an attached harness.”
Frankie’s favorite machine was called the Upsy and it helps him stand up, hold his head up and walk, assisted by an adult.
Frankie spent five years training at Upsy and on Hannah and Tom’s wedding day, she was able to walk her mother down the aisle, followed by her siblings Penelope and Teddy.
“He worked really hard and on my wedding day in 2023, he managed to do it,” Hannah said.
‘Frankie wasn’t nervous, he’s a very sociable person.
“I can’t put into words how much it meant: all the struggle, all the love, all the joy.”