In September 2024 our world was turned upside down when our beautiful boy Kairo received a devastating diagnosis of Duchenne Muscular Dystrophy (DMD) at the age of 5.

DMD is a very rare life limiting, muscle wasting disease which mostly affects boys. Approximately 1 in every 3500 boys and 1 in every 50 million girls are born with the disease world wide. There are around 2500 people living with the disease in the UK.

DMD gradually weakens all muscles within the body including the heart and respiratory muscles which is the main cause of the shortened life expectancy of 20s to 30s. It also affects the brain which can lead to learning and behavioural challenges.

Generally children decline between the age of 8 and 12, by early teens are full time wheelchair users, late teens lose the ability to use their arms and then suffer respiratory issues and heart failure.

There currently isn’t a cure for this devastating illness but medics, researchers and fundraisers are working hard to develop new drugs, therapies and technologies to hopefully find a cure or something that will significantly slow down the progression.

Kairo is such a loving, fun and active little boy with the BIGGEST smile. We live in hope that this doesn’t have to be Kairo’s story! The understanding and care given for this disease has improved over the years which has helped with quality and length of life. This has been influenced massively by Duchenne UK and other charities raising money to fund vital research.

We have set up a fund called Kairo’s Krew through Duchenne UK, a charity set up in 2012 by 2 amazing mums who have sons with Duchenne. We want to raise lots of money for research and equipment etc that will help Kairo and others to live the best life possible.

Join Kairo’s Krew and help us to Kick Duchenne for good.

Thanks for taking the time to read this.

Lots of love

Kairo, Tarnia, Marcus, Dionté & Tianna xx