This is the moment a boy left ‘not a dry eye in the house’ as he overcame a rare mitochondrial disease to walk his mum down the aisle at his parents wedding. Little Frankie Penfold learnt to walk, with the help of his grandfather, so that he could accompany his mum Hannah down the aisle to wed his dad Thomas.
The wedding was culmination of months and years of physiotherapy and hard work for little Frankie, who is one of only a handful of children in the country with his condition. He is otherwise completely non-mobile and non-verbal, but his life – and that of his family – has been transformed thanks to a unique Bristol-based pop-up inclusive activity facility.
And thanks to the staff and equipment at Gympanzees, Frankie was able to not only walk his mum down the aisle, but also joined the couple’s first dance and even made a speech at the reception. A lot of that was down to a piece of equipment called the ‘Upsee’, which enables Frankie to walk upright with the help of an adult, and it took a lot of training and practice to make it happen.
Mum Hannah, from Weston-super-Mare, said the moment came at the end of a long road of hard work for Frankie, now ten, but was ‘a dream come true’. Hannah and Tom got married at Quantock Lakes in Somerset, and the bride admitted she was very nervous as she arrived. “We came to a tunnel. My dad Ian was waiting, sat on a chair with Frankie next to him in the Upsee. And I just walked down and Frankie’s face lit up,” she said. “My dad got emotional. It wasn’t just about us, it was a dream come true for my dad as well.
“At that moment I just felt so sick, not worried, it was just that I couldn’t believe this was happening. I couldn’t believe that this dream was about to come true, and it was the happiest day of my life. I know that sounds so cliched because everyone says it about their wedding, but the hard work that went into all the sessions before had all paid off, and it was like each of those steps that Frankie took walking me down the aisle was like a precious memory of what we had gone through, and we’re here and we’re doing it,” she added.
Frankie’s little brother and sister, Teddy, four, and Penelope, six, were Hannah’s page boy and flower girl, and were nervous about walking down the aisle with all those people watching, but not Frankie. “They were petrified walking down the aisle, but Frankie is absolutely a people-person. He loved the attention,” said Hannah. “As soon as people started clapping, he was beaming. My dad was telling me he was pushing and weight-bearing, pushing into his feet, and standing up straight, he was taking it all in and laughing his socks off, he was smiling. He loved the attention.
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“Frankie absolutely blew the roof off that building with the amount of people that were so proud of him, there was not a dry eye in the house. It’s hard to explain. It just felt absolutely a miracle,” she said.
Frankie’s life – and his family’s – was transformed when he first went to Gympanzees back in 2018. The charity runs pop-up activity and play sessions that children of all ages can attend, which are totally inclusive, so disabled children can be joined by the siblings too.
The sessions run during school holidays, seven days a week, but the charity has ambitious £8m plans to set up a permanent base in what was the old Aust Services by the Severn Bridge near Bristol, and open all year round.
Frankie’s life changed the first time he used a piece of equipment called an Upsee. “Frankie is completely non-mobile and for him to keep his body upright is significantly hard, so when we first got introduced to Gympanzees back in 2018, they had this piece of equipment called the Upsee there,” explained Hannah. “For the first time seeing Frankie in the Upsee was absolutely breathtaking. It’s a memory that I will never forget. His face absolutely lit up. Seeing all his friends around him, kicking a football for the first time, it gets me – I well up thinking about it – because when you’re being told your child isn’t going to live until he’s two, let alone doing all these amazing things, being able to walk, kicking a football, is just amazing.
“And if it wasn’t for Gympanzees we wouldn’t have known about this piece of equipment. And that was it then, from that day on, I had this dream that I knew I would want him to walk me down the aisle, but it was not an easy ride.
“Frankie’s muscles were so weak and Frankie’s condition isn’t just to do with his muscles, it’s to do with the energy in his muscle cells. It’s significantly hard for him to keep his head up and his body up,” she explained.
If the guests at the wedding were loving Frankie walking his mum down the aisle, he had a few more surprises in store. During the speeches, he had the last word. “He had a surprise up his sleeve – a surprise speech at the end,” explained Hannah. “He had been working for months on his Eye Gaze, which is a communication tool, because he’s non-verbal. He wrote a little speech, and he wrote about his mummy and daddy, which was absolutely insane.
“Frankie doesn’t speak, so we know that it’s not his voice on the Eye Gaze, but his words, meant so much to us, and just hearing them out loud, what he had chosen to say about us, was really mindblowing and was a memory of a lifetime,” she added.
And Frankie wasn’t done there. Hannah and Tom had their wedding dance, but halfway through the song switched to Frankie’s favourite – Reach for the Stars, by S Club 7. “It’s because he’s an absolute trooper who faces challenges every day and he does reach for the stars all the time,” said Hannah.
And when the song came on, Frankie and Teddy and Penelope joined their parents on the dance floor. “He got in his standing frame which enables him to stand upright with a lot of support. We had that family moment, it was just magical. I wanted him to be included in absolutely everything, because the reality for Frankie is you don’t know what’s around the corner, and it is life-limiting, it’s horrendous, but his condition doesn’t define who he is, and he overcomes every challenge he faces – he’s incredible. It wouldn’t have been possible without Gympanzees,” she added.
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