Two Morecambe women are preparing to take on an extraordinary endurance challenge to raise money for a little girl living with an ultra-rare genetic condition.
Friends Ellen Robinson and Becky Reynolds will attempt to complete an ‘ultra marathon’ by running 5km every hour on the hour for 12 consecutive hours.
In total, they will cover a distance of 60km, or 37 miles, along Morecambe prom on Sunday May 24.
The challenge is being undertaken in support of 20-month-old Ada, who was recently diagnosed with DeSanto-Shinawi Syndrome (DESSH), an exceptionally rare genetic disorder affecting fewer than one in a million people.
“We are incredibly proud of our beautiful Ada," said her parents Rachel and Andy.
"She brings us so much joy and happiness into our lives every day.
“As parents, Ada’s diagnosis has left us feeling a multitude of emotions that are hard to explain.
"Relief and validation because this explains so much of Ada’s difficulties but also profound sadness and uncertainty about her future and that it will likely be very different to how we imagined.”
Ada
The condition affects development, behaviour and overall health, and there are believed to be only 20 to 30 known cases in the UK.
Ada currently lives with global developmental delay, low muscle tone and epilepsy, while doctors continue to investigate possible hearing and vision impairments.
Because DESSH is so uncommon, there are currently no approved treatments targeting the underlying cause of the condition.
However, a major breakthrough came in 2025 when researchers at the Mayo Clinic used artificial intelligence to identify an existing drug that may help activate the healthy copy of the affected WAC gene.
Early laboratory testing and treatment of a single child reportedly showed promising signs of developmental progress and improved seizure control.
Now, Guy’s and St Thomas’ NHS Foundation Trust is preparing to launch a UK-based clinical trial in partnership with the Mayo Clinic team.
The trial will involve children and adults with DeSanto-Shinawi Syndrome from both the UK and overseas.
The charity must raise £250,000 to fund the two-year study.
So far, supporters have already raised £130,000, which is enough to secure Ada’s place in the trial when it begins, but further funding is still needed to continue the research into a second year.
Ellen Robinson first met Ada’s family in 2023 while working as a childminder for Ada’s brothers, Alfie and Eric.
She said this running challenge was their way of helping to make the trial possible.
“After running a marathon last year, we decided to do something even bigger.
"We know this challenge is going to hurt, but it’s for such an important cause.”
Originally, four women planned to take part, but friends Emily and Laura were forced to withdraw due to injury.
Despite their disappointment, both will still be supporting the event on the day.
The runners say awareness and support is just as important as donations and are encouraging people to share their fundraising page and cheer them along as they undertake the gruelling challenge.
The event has also received support from local businesses, including Miogelato and Nin’s Crafts, who will support the duo in various ways.
Donations can be made through the team’s JustGiving page HERE, with all proceeds going directly towards funding research through Rare People.
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