Nicola Deeley, a remarkable woman with a condition that only affects one in a million people, has achieved an incredible feat – running over 2,000km to raise money for others who suffer from the same rare condition as her. Nicola, a research and development scientist, embarked on this journey simply because she wanted to make a difference in the lives of others. Her determination and selflessness are truly inspiring.
Fibrous Dysplasia, the condition Nicola bravely faces, is a rare bone disease that causes tumors to grow in place of bone. With an estimated occurrence of only one in every 300,000 to 1,000,000 people, it receives very little attention and funding. Nicola, who has experienced chronic pain for the last ten years, wanted to raise awareness of this condition as well as support research efforts to find a cure.
Throughout the year, Nicola participated in multiple races to reach her goal. From the Manchester Half Marathon to the Liverpool Santa Dash, from the Chase the Sun Tatton 10K to a Grinch 5K in West Kirkby, Nicola pushed herself to complete each race. In total, she ran an astounding 2,215km in 2021. Her determination was fueled by the desire to run 10k for each person in the UK suffering from Fibrous Dysplasia, her way of showing solidarity and support for her fellow sufferers.
Nicola’s journey was not without challenges. The Three Peaks race, in particular, tested her physical and mental strength due to the altitude change, worsening her condition. However, she persevered, determined to prove to herself that she could conquer any obstacle. Her resilience and courage are truly commendable.
By undertaking this incredible feat, Nicola not only raised funds but also raised awareness of Fibrous Dysplasia and its impact on those living with it. Migraines and bone pain are just some of the symptoms sufferers endure daily. Nicola’s efforts have shed light on the struggles faced by those with rare conditions, giving them a voice and fostering empathy among the general public.
Currently, Nicola has successfully raised £930, almost reaching her target of £1,000. Every donation brings her closer to making a meaningful impact in the lives of those affected by Fibrous Dysplasia. If you wish to contribute and support Nicola’s cause, please click here.
Nicola’s journey has not come to an end yet. With her unwavering dedication, she is already on the lookout for her next challenge to continue making a difference. Rare Disease Day on February 28th serves as an important reminder of the ongoing battles faced by individuals living with rare conditions. Nicola’s determination is a clear testament to the strength of the human spirit, and her story is an inspiration to us all.
