Grayson Filitz and Kairo Barranco have both been diagnosed with Duchenne muscular dystrophy, a severe, progressive genetic disorder that causes muscle degeneration and is life-shortening, with a life expectancy of around 30, according to their families. Kairo Barranco received his diagnosis in September 2024, his family reports. 5 million to fund a treatment that is only accessible in America, they say.
Meanwhile, Kairo Barranco's family is attempting to raise £20,000 to adapt their home to better accommodate his declining mobility, they report. Both families reported that early warning signs of developmental delays were initially dismissed by healthcare professionals. Storm Filitz repeatedly raised concerns about Grayson's development with nurses and GPs, but was told he was a 'late bloomer', she says.
Grayson just consistently missed all his milestones. He only sat up without assistance at eight months, started crawling at the age of one and took his first very wobbly steps on his second birthday. He was also non-verbal. He only said two words and it was Mama and Dada.
Tarnia Richardson first sought advice about Kairo's development when he was around two years old during lockdown and was assured it was likely delayed development, she states. Grayson Filitz missed developmental milestones, such as sitting up without assistance at eight months, crawling at age one, and taking first steps on his second birthday, and was non-verbal except for saying 'Mama' and 'Dada', his family notes. Kairo Barranco struggled to jump with both feet off the floor at around age two, showing a hop motion instead, and was slower in climbing than others, his family says.
The diagnostic journeys for both boys involved navigating both private and National Health Service pathways. Grayson Filitz's parents sought private medical help in 2023, consulting a private paediatrician in Windsor and a paediatric neurologist consultant in Lisbon, they report. They were given a waiting time of a year to see a paediatrician on the NHS, they say.
The nurses kept saying to me he was okay and I kept being fobbed off by GPs, who said he was a 'late bloomer'. I kept saying 'no, there is something wrong with my child'. He seems to always be in pain.
For Kairo Barranco, the path led through the NHS after his school expressed concerns; he was referred to an outpatient clinic at Northern General Hospital in Sheffield in April 2024, his family states. Initial tests suggested dyspraxia, but subsequent blood tests showed elevated CK levels indicating muscle dystrophy, which ultimately led to the DMD diagnosis, his family explains. Kairo Barranco now depends on a wheelchair when walking for long periods, his family reports.
Critical unknowns remain about treatment options and the level of support available from the UK healthcare system.
I couldn't wait a year.
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.
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.