BOY, 7, DIAGNOSED WITH RARE MUSCULAR CONDITION AFTER HE STOPPED JUMPING
A little boy was diagnosed with a life-limiting, muscular condition after his parents realised he was unable to jump.
Kairo Barranco, seven, was diagnosed with Duchenne muscular dystrophy (DMD) – a rare, progressive, muscle-wasting condition in September 2024.
His parents Tarnia Richardson, 42, and Marcus Barranco, 45, noticed he struggled to jump when he was just two but thought he was “tentative” at first.
But when he started school, they realised his motor skills were behind that of his classmates and Tarnia took Kairo to see a GP.
A blood test and genetic testing diagnosed him with MND and he now relies on a wheelchair when he is walking for long periods of time.
The family, from Sheffield, south Yorkshire, are trying to raise £20,000 to make their home more accessible for Kairo as his mobility continues to deteriorate.
Tarnia, who works for the NHS as a Finance Manager at Sheffield Teaching Hospital, said: “When he was about two, I did realise that he struggled to get both feet off the floor. So he did a bit more of a hop motion rather than a jump.
“I did notice he was a little bit tentative when he was trying to climb, and he was a bit slower than everybody else, but he managed.
“And I just thought, he’s just a little bit scared of doing certain things. And I did usually just say he’s a bit tentative.”
Tarnia first sought advice when Kairo was around two years old with a health visitor online during lockdown, and was assured that it was most likely a bit of delayed development and nothing to worry about.
But after Kairo went to school, his teachers began to show concern that his motor skills were slightly behind the other children in his class, and after a while the concern grew as they did not seem to be improving as much as his peers.
The school wrote a letter and Tarnia was able to get Kairo an appointment at the GP before getting referred to an outpatient clinic at Northern General Hospital in Sheffield in April 2024.
After initial tests, doctors thought Kairo’s symptoms were caused by dyspraxia, a form of neurodiversity that affects movement and co-ordination.
However, blood tests showed an elevated CK level which indicated muscle dystrophy, and further genetic testing led to Kairo being diagnosed with DMD in September, 2024.
Tarnia said: “Because we really thought it was dyspraxia which is a bit different. Then to find out it wasn’t and to find out the severity of the illness.
“It wasn’t a relief, it was more of a ‘I really wish he had dyspraxia’ and he didn’t.”
DMD affects limb muscles and causes progressive weakness, gradually taking away the ability to walk and leaving most sufferers fully wheelchair bound by their early teens.
The condition can also be life-limiting with sufferers having an increased risk of heart or respiratory failure before or during their 30’s.
Kairo now needs a wheelchair when he is walking for a long period of time.
Tarnia does her best to make sure Kairo remains as active as possible whilst managing his condition, which includes taking him to street dance classes every week.
She said: “If you tailor the activities, he’s pretty much okay with a lot of things at the minute.
“He does have better days and worse days, but Kairo is really good at saying, my legs are tired now, so we’ll stop whatever he’s doing.”
Kairo takes steroids to help slow down the muscle degeneration, but even so, sufferers of DMD typically will begin to see a decline from between the ages of eight and 12.
With Kairo turning eight this year, Tarnia and Kairo’s dad, Marcus, are trying to stay ahead of the disease.
They are hoping to fundraise £20,000 to help build an accessible bedroom and wet room for Kairo which will likely require planning permission as well as a lengthy build time.
Tarnia said: “Although he’s mobile at the moment, the decline comes between eight and 12. We need to be ready and prepared for that happening.
“The priority at the moment is getting his bedroom and wet room sorted, because that type of thing doesn’t happen overnight and it’s very expensive.”
Kairo’s diagnosis has not just affected him but his family as well. Tarnia has reduced her role and hours at work to allow more flexibility to take care of Kairo and take him to his frequent hospital appointments.
But the family have found a lot of support thanks to the fantastic staff at Sheffield Children’s Hospital, from joining Facebook groups of other families dealing with DMD and seeking support from the Duchenne UK.
Tarnia said: “The biggest help I’ve found is the community of people who are living the same with children who have got Duchenne.
“And also linking in with the charity because being involved with that and going to the conferences and getting all the information you can see all the research that is going on with drugs and stuff that are on the horizon at some point in time. It gives you that hope that things will potentially get better.
“When you are in a position like this, getting involved and talking to people who are going through the same thing, if it wasn’t for that I’d have probably gone crazy!”
You can support Kairo’s fundraising campaign to help make his home accessible for years to come here: https://www.justgiving.com/crowdfunding/kairovsduchennemd
Pascale Harvie, President and General Manager at JustGiving, said: “Tarnia’s determination to provide for her son Kairo in the face of a life-changing diagnosis is inspiring.
“It’s impossible to imagine the emotional and physical burden this has had on the family, without the added financial pressures to contend with too.
“It’s incredible to see how much has been raised so far, and we wish Tarnia all the best in hitting her target.”