Heartbreaking moment, little boy defies doctors to walk mother down the aisle | United Kingdom | News
A young couple’s doctors were told their son would never be able to sit up, hold his head up, crawl or walk – and was only expected to live into his teens. But against all odds, Frankie Penfold took her first steps down the aisle at her mother’s wedding and there wasn’t “a dry eye in the house”.
Frankie, now 10, was born with SUCLA-2 mitochondrial depletion syndrome, an inherited disorder that affects early brain development. His parents, Hannah and Tom, both 32, were told by doctors that he would not live beyond his teenage years.
Its symptoms include mild deafness, inability to hold the head up, and inability to walk. But he used machines with harnesses to help him strengthen his muscles by leaning on them, alongside adults helping him walk – and trained for five years to accompany Hannah to gone on April 8, 2023.
Hannah, a fundraising assistant from Weston-super-Mare, North Somerset, said: “There wasn’t a dry eye in the house – I will never forget this moment for the rest of my life. life. Mine and Frankie’s were Tom’s and my dad’s. People were smiling, crying and clapping the whole time. It was like each of those clips were treasured 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. During his first month he failed several hearing tests, leading Hannah and Tom, a senior operations manager, to think he was slightly deaf.
But at four months old, he wasn’t achieving any of his early goals, like holding his head up or sitting up. Hannah said: “His hearing tests revealed he had mild hearing loss. We accepted it; we thought it was something we could handle. But we slowly started to notice that he wasn’t meeting his goals.
At five months old, Hannah and Tom suspected Frankie had cerebral palsy and began a lengthy diagnosis process. The toddler required blood tests, occupational and physical therapy, and was finally diagnosed just before his first birthday.
Hannah said: “I had never heard of mitochondrial disease. I wasn’t prepared for it and felt like my world was falling apart. It was truly heartbreaking and something I didn’t know about. I’ll never get over it.” Frankie was examined by a professor, who clarified that he had type SUCRA-2, 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.
The couple tried to include Frankie as much as possible with her siblings, Penelope, six, and Teddy, four. This led Hannah to realize that she wanted Frankie to walk her down the aisle – as her brother and sister would as well.
He started having sessions on different physiotherapy machines at Gympanzees, a support organization based in Bristol. His favorite was a machine called Upsy, which helps him stand, keep his head up and walk, assisted by an adult.
Hannah said: “Going back to 2018, Gympanzees founder Steph [Wheen]introduced us to the Upsy. A child in the device is able to bear weight and feel the use of their legs through an attached harness. Frankie literally got into it, stood up for the first time and his eyes were shining.”
Frankie spent five years training on the Upsy – and on Hannah and Tom’s wedding day, he was able to walk his mother down the aisle, followed by Penelope and Teddy.
Hannah said: “He worked so hard and on my wedding day in 2023 he managed to do it. Frankie wasn’t nervous – he’s such a people person. He was absolutely beaming in the background. I can’t put into words how great it was – all the struggle, all the love, all the joy.”
