The Lucas Brand Moyamoya Foundation

In a poignant and fitting tribute to their late son Lucas, parents Danielle and Luke, along with support from family and friends, will be taking on this month’s Sheffield Mutual Sheffield 10K. They will also be running to raise funds for the Lucas Brand Moyamoya Foundation.

Following a very short illness with Moyamoya, Lucas was only eight years old when he passed away. Moyamoya disease is a rare, one in a million, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain. Moyamoya means “puff of smoke” in Japanese and is used to describe the tangled appearance of tiny vessels compensating for the blockage. The disease primarily affects children, but can also occur in adults.

In memory of Lucas, the Lucas Brand Moyamoya Foundation was set up by parents Luke and Danielle. The foundation hopes to increase awareness of the disease across UK, while supporting families and children affected by this gruelling disease. The foundation is also working with the NHS to increase knowledge but to also find an earlier diagnosis.

We caught up with Lucas’ parents ahead of event day. Find out more about their story below.

“Lucas’ symptoms first started around March 2021 when he began suffering from severe headaches, nosebleeds, high blood pressure and vomiting. After many hospital trips and investigations by medical experiences, doctors were unable to identify a diagnosis for Lucas’ symptoms.

“On the 11th November 2022. Lucas suffered from his first stroke identified through an MRI scan that left him with temporary left sided paralysis. Lucas spent 7 days in the neurology department at Sheffield Children's Hospital but a cause for the stroke was still unidentified.

“Between November 2022 and June 2023, Lucas symptoms continued to get worse and he suffered from a number of mini strokes all resulting in hospital stays and further investigations.

“Following a stroke episode Moyamoya disease was found on the right side of Lucas brain and at this point it was identified Lucas would need brain surgery to reduce chances of further strokes and loss of life.

“The medical experts from the Neurology department were able to identify Moyamoya had been present on all of Lucas MRI & CT scans from November 2022 but had gone unnoticed due to a lack of awareness and training around the disease.

“Lucas continued to suffer from symptoms and following a further scan in August 2023 after another stroke episode we were told by the medical experts that Moyamoya had spread across Lucas brain and was now present in three separate areas. This now meant Lucas would need three separate operations to prolong his life.

“After complications, Lucas tragically lost his life on 29th September 2023. Our son fell asleep in the arms of mummy & daddy, leaving us and his little sister, Isla behind beyond heartbroken.

“During his fight the most obvious thing was the lack of awareness for the disease across the medical profession and the absence of any support for families going through these tough times.

“This has led to The Lucas Brand Moyamoya Foundation being created and we aim to work closely with medical professionals to create both written and online information packs, fund NHS training to increase knowledge and awareness of Moyamoya, provide support networks for families and fund holidays, trips out & more for children fighting so bravely against this disease.

"Twenty-three runners are running the 10K, which also falls on the same day as Lucas’ one-year anniversary since he passed away. Our daughter Isla, who is seven will also be taking part in the Mini run straight after the 10K.”

Good luck team, we can’t wait to cheer you across the finish line on race day!

To support the foundation and to find out more click here

Entries are still open for the Sheffield Mutual Sheffield 10K taking place on Sunday 29th September. To find out more and enter, potential participants are encouraged to click here