Running the Yorkshire Marathon for Rosa and RTD
12 August 2025
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View all events12 August 2025
Daniel is running the 2025 Altra Yorkshire Marathon to raise money for Cure RTD Foundation after his daughter Rosa was diagnosed with the condition at only 2 years old.
Born in 2022, Rosa was a beautiful, healthy baby when her parents welcomed her into the world.
"Like any parents, we looked forward to watching her grow, hit milestones, and enjoy all the little moments of childhood. For her first two years, life was filled with smiles, giggles, and she was a seemingly healthy little girl."
But, when Rosa reached two years old, some subtle symptoms began to appear. She developed a raspy breathing sound that couldn't be explained after innumerable tests, with doctors labelling her a mystery.
Then, the worst happened - Rosa suffered a choking episode when she suddenly stopped being able to swallow. She was rushed to hospital and ended up in intensive care on a ventilator, fighting for her life.
"It was every parent's worse nightmare."
Neurology eventually became involved and, after further investigation, they discovered that Rosa had Riboflavin Transporter Deficiency type 3. An ultra-rare genetic condition affecting the motor and sensory nerve cells, there are only 450 known cases of RTD type 3 worldwide. However, experts believe that there are likely thousands more who lose their lives to the condition without ever knowing.
Many doctors have never even heard of RTD, which is why the work that the Cure RTD Foundation does is so important. The charity directly connected Rosa and her family with specialised, and provided vital information to help ensure that she was started on the correct medication. This is helping to stop the progression of the disease, and hopefully even improve her symptoms over time
Today, Rosa is tube-fed, and has now become profoundly deaf, but there is hope yet for the family.
"We're hopeful she will soon be able to return to nursery, and plans are in place for cochlear implants which, if successful, could give her the gift of hearing again."
The Cure RTD works to raise funds for research projects aimed at finding new treatments for the condition, alongside and ultimate cure for RTD. That's why Daniel is running this year's Yorkshire Marathon to raise money for the foundation.
"Running the 2025 Altra Yorkshire Marathon is my way of giving back - to raise both funds and awareness so more families can get the diagnoses and treatment they need in time."
Daniel is aiming to raise £3,000 for the charity, and is already more than half way towards achieving his goal thanks to the support of friends and family.
"Every step I take is inspired by Rosa - her bravery, her determination, and her ability to keep smiling through it all."
You can support Daniel in his efforts to raise money for the foundation by visiting his JustGiving page, seen below.
Daniel's JustGiving page