Sutton Woman’s Double Running Challenge for Rare Disease in 2026

Key Points:

• Sutton lady Tatiana Parkinson, who has never run a marathon or any long endurance race before, will be undertaking the task of completing two races at once; the 10K and half marathon.
• The physical challenge will be done in order to raise money for nine-year-old Josh Mayle, who used to be her son’s former school mate.
• Josh Mayle is suffering from Niemann-Pick Type C, which is a rare and rapidly progressive neurodegenerative condition due to fat accumulation in the brain, liver and spleen.
• This condition has made Josh unable to walk and has made it hard for him to talk, where he needs care all the time.
• It should be noted that Tatiana Parkinson owns a dancing, pilates, yoga and body flow company, and is taking this physical challenge even though she does not have ACL in her right knee and MCL in her left one.
• It has been difficult for Josh’s family to get essential equipment like a wheelchair because they have had to wait for three months. They have had to make payments themselves and call every day to find out whether there have been any cancellations.
• Tatiana Parkinson has a target of raising money through GoFundMe of £1,000 and she has raised £810 so far although she hopes to raise more money.
• On September 27, Tatiana Parkinson will participate in the Vitality London 10,000 event on The Mall, finishing outside Buckingham Palace and then she will run a half marathon on October 11.

Sutton (South London News) September 11, 2026—— A Sutton resident is pushing her physical limits through a demanding endurance schedule to support a local family facing an extraordinary medical crisis. Tatiana Parkinson, a local business owner who had no prior background in running, has committed to completing both a 10K and a half marathon to generate financial assistance and public awareness for nine-year-old Josh Mayle, who previously attended school alongside her son.

How is Tatiana Parkinson challenging herself for Josh Mayle?

The fundraising initiative centers around two major athletic events scheduled for the autumn calendar. Tatiana Parkinson will first participate in the Vitality London 10,000 on September 27, a prominent race route beginning on The Mall and culminating outside Buckingham Palace. This will be followed shortly after by a half marathon appearance on October 11.

The undertaking is particularly grueling given Tatiana Parkinson’s personal physical constraints. Operating her own dance, Pilates, yoga, and body flow business, she faces structural hurdles as she lacks an anterior cruciate ligament (ACL) in her right knee and a medial collateral ligament (MCL) in her left knee.

When discussing her motivation to train through discomfort, Tatiana Parkinson told Your Local Guardian:

“Sometimes when I don’t feel well, sometimes I don’t really want to go and run. But the thought that I am going to help him, it just helps massively.”

Regarding her physical resilience, she further explained to Your Local Guardian:

“I’m willing to put my body through this challenge because my difficulties [don’t compare] to their difficulties.”

What is Niemann-Pick Type C and how has it affected Josh Mayle?

Josh Mayle, aged nine, was diagnosed with Niemann-Pick Type C, an extremely rare and severe neurodegenerative condition estimated to impact roughly one in every 100,000 individuals. The progressive illness stems from a harmful accumulation of fats within vital organs, specifically the brain, liver, and spleen.

The impacts of the diagnosis have advanced rapidly, stripping the young boy of his mobility and speech capabilities. Tatiana Parkinson described the ongoing deterioration to Your Local Guardian, stating:

“Every day is a struggle. Every day he struggles with something, and his needs are increasing dramatically.”

Medical science currently provides no definitive cure for Niemann-Pick Type C, meaning available interventions are strictly limited to symptom management and slowing disease progression. Because of this, the physical, emotional, and logistical toll on Josh Mayle’s household has intensified significantly.

What financial and administrative hurdles are the family facing?

Beyond managing the round-the-clock care requirements of a child with complex needs, Josh Mayle’s family has encountered systemic bottlenecks regarding vital medical equipment. Tatiana Parkinson highlighted to Your Local Guardian that statutory delays have forced the family into unexpected out-of-pocket expenses.

Illustrating the administrative frustration, Tatiana Parkinson stated to Your Local Guardian that the family was left waiting three months for a necessary wheelchair, noting that they

“had to call the agency every single day sometimes to see if there were cancellations.”

Because public provisions struggle to keep pace with the rapid advancement of neurodegenerative disorders, the family relies heavily on supplemental funding to cover specialist care, home adaptations, essential therapies, and hospital transport costs.

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What are the goals of the GoFundMe campaign?

To bridge the gap left by underfunded public infrastructure, a fundraising campaign was established online via GoFundMe to support Danielle Mayle and the broader family unit. Tatiana Parkinson initially established a modest milestone of £1,000, which progressed to £810 by the time of publication, though she has expressed a strong desire to see totals scale much higher.

Emphasizing the inadequacy of small funding goals relative to actual expenses, Tatiana Parkinson told Your Local Guardian:

“£1,000 is not a lot for what they need as a family, so I would love to raise a few thousand at least.”

Beyond the monetary contributions, Tatiana Parkinson stressed that a core objective of her double running campaign is to draw widespread public attention to a condition that remains widely misunderstood and under-resourced. Summarizing her overarching intent to Your Local Guardian, Tatiana Parkinson noted: “I wanted to do this challenge to help them practically as well as raise awareness for this devastating disease.”

Background of the Development

Niemann-Pick disease represents a group of severe inherited metabolic disorders characterized by the body’s inability to metabolize cholesterol and other lipids properly within cells. Categorized into several types, Type C is specifically a genetic lipid storage disease that impairs the transport of cholesterol through cellular structures, leading to the abnormal accumulation of glycosphingolipids and cholesterol in the central nervous system and visceral organs.

Historically, community-led grassroots fundraising campaigns across the United Kingdom have frequently stepped in to fill voids left by stretched social care budgets and National Health Service resource constraints. Families dealing with ultra-orphan conditions—diseases affecting extremely small patient populations—often face prolonged administrative delays when trying to procure bespoke mobility aids, home hoists, and continuous nursing support. Grassroots efforts, such as athletic challenges undertaken by family friends, neighbours, and local business owners, have increasingly become a primary lifeline for securing immediate private therapies and specialized family respite.

Impact on the Particular Audience

This local fundraising development is expected to yield multiple direct impacts on its primary audience—specifically local community members, families navigating rare pediatric conditions, and regional support networks in Sutton. By drawing high-visibility attention to the realities of Niemann-Pick Type C through local media reporting and athletic milestones, the campaign serves to educate the wider public on the critical need for accelerated medical research and streamlined social care responses.

For the immediate family, the tangible financial influx helps alleviate part of the crushing monetary pressure associated with self-funding delayed medical apparatuses and private care therapies. Furthermore, public awareness campaigns of this nature frequently inspire broader regional solidarity, encouraging other community groups, local enterprises, and regional stakeholders to mobilize resources, volunteer time, or establish secondary support structures. This collective community engagement helps reduce the isolation often experienced by caregivers managing rapid-onset neurodegenerative illnesses at home.