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A mum whose 12-year-old son has a rare genetic disorder has spoken of his sunny, cheerful disposition and described him as her ‘hero’.
Franklin Cordell, from Harlow, was diagnosed with Adrenoleukodystrophy (ALD) when he was eight and receives care from East Anglia’s Children’s Hospices (EACH) at Milton.
His condition first came to light when his eyesight began to deteriorate. He started having accidents at school, walking into things, and, at first, his parents thought it might be a balance-issue caused by dyspraxia.
When opticians said his eyes were perfectly healthy, the couple were perplexed and pushed for a brain scan to try and establish the problem. It was then his condition was diagnosed.
“It was a horrific outcome, and we were told life expectancy is usually two to four years,” said mum Lauren.
“We were devastated, and our world collapsed.
“Franklin then had a seizure which accelerated things even more, to the point both his speech and mobility rapidly deteriorated.
“It was horrendous, but, thankfully, things are much more settled now.
“He’s in a surprisingly good place. Things are stable in terms of his medication and he’s such a happy boy.
“He can’t speak but blinks to communicate and every now and again he’ll say something sounding like ‘mum’, which is so lovely and makes me want to cry.
“Franklin is my hero and keeps me going if I’m having a rough day.
“When I think about all he’s accomplished, and how happy he is despite the challenges he faces, it makes me extremely proud. He’s our little miracle.”
Franklin particularly enjoys his fortnightly visits from EACH Play Specialist Helen Thrower, who has tapped into his thirst for geography by theming their sessions around different countries.
Together with his family, they wear costumes and use props, stories, food and drink to bring their travels to life – even stamping a special passport to tick each destination off their fast-growing list.
So far, they have visited more than 30 far-flung places together, from Australia, China and Hawaii to Italy, Mexico and Peru.
For their most recent session, Helen turned up in a spectacular Welsh dragon outfit – with Franklin and Co. wearing masks depicting characters from TV hit Gavin and Stacey.
“It’s grown and grown – to the point we’re fast running out of places to visit,” said mum Lauren, who is married to Dean.
“Franklin loves it and gets so excited when he knows he’s going to see Helen.
“He took to her straightaway, and the two of them have developed a real bond. She knows what he wants and what makes him laugh, and we call her crazy Helen!
“She’s become part of the family and been a big part of our journey.
“She helps so much and she’s someone we all feel completely comfortable with, because she’s so easy to talk to.”
Globe-trotting Franklin and Helen have visited 33 countries together – Australia, Belgium, Canada, China, Egypt, Finland, France, Germany, Greece, Hawaii, the Netherlands, Iceland, India, Ireland, Italy, Jamaica, Kenya, Madagascar, Malaysia, Mexico, New Zealand, Nigeria, Peru, Poland, Romania, Russia, Scotland, Spain, Switzerland, Thailand, USA and Wales.
“Helen clearly puts so much thought into every session and is so caring and loving,” added Lauren.
“Franklin’s face lights up when he sees her, and she always brightens up our day.
“She lights up our lives, and I’d love to be able to bottle the fun and happiness she brings into our home.
“It’s hilarious, and it’s not just the time when we’re together that means so much to Franklin. We’ll talk about it later in the day and he’ll shout and laugh.”
Franklin enjoys hearing fun facts about their chosen destination and the pair search for it on his inflatable globe.
Other highlights include a Paddington Bear-themed jaunt to Peru, rustling up a Greek salad and playing a ukulele during a whistlestop trip to Hawaii. They also enjoyed a memorable trip to Franklin’s favourite country, Iceland, recreating the jaw-dropping Northern Lights.
Helen first started working with Franklin in 2023, at a time when his health was rapidly deteriorating. He was unable to go to school and feeling isolated from his friends.
“I wanted to bring some fun and stimulation into his family home and knew he had a great sense of humour from an early session we did revolving around the book Aliens Wear Pants,” she said.
“It resulted in me wearing lots of pairs of silly pants!
“We continued with different sessions themed around all different things and then I discovered Franklin had a passion for geography. He’d been geography ambassador at school.
“He had a wish to travel, which sadly wasn’t possible. Instead, I thought it would be brilliant to bring the world to him.
“I made a passport and every time I went to see him, we’d go to a different country, enjoying all different sensory activities themed around that place.
“Franklin’s family, including his sister and grandparents, have got on board and become so invested.
“They’ve all made such an effort, and it’s like they’re going on holiday together, which is very special. Franklin’s passport, containing many photos of his travels, has become a cherished keepsake.
“I’ve got such admiration, and it’s thanks to them it’s worked so well.
“Hopefully they’ve created some wonderful memories along the way, and, from my point of view, it’s become a huge but fun play-based project. It’s so rewarding, and seeing the impact it has on Franklin and his family is very satisfying.”
Helen spoke about the project at a national conference for health play specialists during the summer and says colleagues at the hospice have been extremely supportive, helping source things for her to take and even organising video messages from friends who live overseas.
Franklin is about to start having hydrotherapy sessions while both parents receive counselling from EACH.
Sister Kennedy is also due to start having art therapy to help navigate her thoughts and feelings.
“Ironically, I was very much against it when I first heard about the hospice,” added Lauren.
“I didn’t want to go down that road, but the last few years have opened my eyes and made me realise it’s not just about end of life – it’s about having fun and creating memories along the way.
“EACH does so much for children and families like ours and hopefully sharing our story helps shine a light on the amazing work it does.”
