Catherine TurnerA heartbroken but determined father from Wetherby is preparing to trade the familiar streets of Yorkshire for the unforgiving dunes of the Sahara Desert to honour the memory of his young daughter. Mark Normington, (48), is a man on a mission. Carrying a weighted pack and a heavy heart, he is often seen training on local trails for a journey that most would find impossible. On 5th March 2026, Mark will leave the safety of home to face the shifting sands and extreme temperatures of the desert to ensure the light of his daughter, Leila Rose Mae never fades.
Incredible Resilience
Leila’s story is one of incredible resilience. She was born in October 2020 and was later diagnosed as being profoundly deaf. Leila eventually received bilateral cochlear implants, a life changing procedure that opened her world. Despite suffering from hearing loss that affected her balance, her family recalls her determination to “always get straight back up” after a fall. This spirit of perseverance defined her short life. However, in July 2023, at just two years old, Leila’s strength was tested by a medical tragedy. Her final illness was exceptionally rare; she contracted two different strains of bacterial meningitis within just two weeks, alongside a battle with pneumonia.
After a valiant fight that included a two-week hospital stay, Leila suffered a seizure, and scans revealed irreversible brain damage. She passed away on July 25, 2023, leaving her parents Mark and Sarah devastated. Her final hours were spent at Martin House Children’s Hospice, Boston Spa surrounded by the love of a family who refused to let her bravery be forgotten.
The Trek for Change
Now, Mark is turning his grief into action. This isn’t a solo journey; he is joining a group of 30 other parents – a group bonded by love and loss – who have similarly lost loved ones to the disease. Together, they will be guided by local Berbers as they navigate the Sahara’s ancient riverbeds and sand dunes in a collective effort to fight back against the illness that changed their lives forever.
The route of this five-day journey involves a nine-hour drive from Marrakech to the desert’s edge before the 50km walk begins. Once on foot, trekkers face extreme shifts in conditions, with daylight highs of 35 degrees Celsius plummeting to freezing at night. To survive the elements, Mark will be self-sufficient, carrying a three-litre water bladder and medical kits while camping “under the stars” each night.
The Mission: A Legacy of Hope
Mark aims to raise over £5,000 for Meningitis Now, https://meningitisnow.org a charity dedicated to the research and awareness necessary to ensure no other family endure this silent killer.
While Mark takes the physical steps in the sand, his wife, Sarah, (43), has been the cornerstone of the fundraising, managing community outreach and the Leila’s Legacy Facebook Page. https://www.facebook.com/people/Leilas-Legacy/61582729170906/#
Reflecting on the mission, Sarah shared:
“Her passing has left a hole in the hearts of everyone who loved her, but her story continues to inspire action. By sharing Leila’s journey, we hope to raise awareness of meningitis and remind people to trust their instincts when it comes to the health of their loved ones.”
The Symptoms: Trust Your Instincts
By sharing Leila’s journey, Mark and Sarah urge other parents to “trust their instincts” and recognise the early symptoms of meningitis. This is a key part of their mission to ensure that other parents are equipped with the knowledge on how to spot the signs of meningitis and septicaemia as soon as possible.
Meningitis can strike anyone, but infants are at the highest risk. Meningitis Now advises looking for:
. Fever: Often accompanied by cold hands and feet.
. Light Sensitivity: A strong dislike of bright lights.
. Physical Pain: Stiff neck, severe muscle aches, or joint pain.
. Confusion/Drowsiness: Difficult waking or extreme irritability.
. The “Glass Test” Rash a red/purple rash that does not fade under pressure.
How You Can Help
As the countdown to March begins, Mark and Sarah are calling on their hometown and local communities to help push Mark towards his final goal. Every donation directly supports life-saving research and helps other families in their darkest hours.
You can support Mark’s mission and read more of Leila’s story on his official JustGiving page.
Click here to donate to Mark’s Sahara Trek in Memory of Leila Rose Mae:
https://www.justgiving.com/page/mark-normington-1760637505624
Mark’s journey proves that while Leila’s life was short, the legacy she leaves behind is as vast and enduring as the desert itself.
Get Involved: Dates for Your Diary
The Wetherby community is invited to support the cause at these upcoming local events:
. Supermarket Bag Pack: Saturday, 21st February at Morrisons, Wetherby.
. Community Bake Sale: Saturday, 28th February at Wetherby Town Hall (Market Square).
. Charity Raffle Draw: Friday, 6th March – Tickets available at local participating shops.
For more information on how to volunteer or to donate, please visit the official fundraising hubs above.
