The Story:

In 2020, our lives changed forever. My 7 year old niece, Taylor, was diagnosed with Niemann-Pick Type C (NPC)—a rare, progressive neurodegenerative disease often described as "childhood Alzheimer’s."

For the first four years of her life, Taylor was just like any other child so the diagnosis came as a total shock. Since the onset of symptoms, we have watched this cruel disease slowly strip away her independence. There is currently no cure for NPC, only treatment to attempt to delay the deterioration and management of symptoms, however most children are not expected to reach adulthood. Taylor is now 14, and the challenges she faces daily are unimaginable.

The Reality of NPC:

NPC affects every part of Taylor’s body. Over the last few years, she has developed:

    •    Physical decline: swallowing issues (resulting in a Mic-Key/G-Tube button), Tremors, Ataxia (difficulty walking), Vertical Supranuclear Gaze Palsy, Macular Dysfunction and Cataplexy.

    •    Cognitive impact: Intellectual decline and slurred speech.

    •    Recent complications: An aggressive form of Crohn’s & Perianal Crohn’s, which has led to further complications due to its complexities alongside NPC, resulting in frequent infections, medication intolerance’s and dehydration. The Crohn’s has caused Metabolic Acidosis, and most recently stoma surgery in late 2025.

Taylor is now almost entirely wheelchair-bound. Because her medications strip her of her immunity, every day is a delicate balance and we feel she has deteriorated over a few short months. She is currently facing further major surgery to remove or disconnect her large bowel and had a terrifying battle with Sepsis in January 2026, following an HSV1 and Colitis infection.

How You Can Help:

Despite the hospital stays, the surgeries, and the loss of her mobility, Taylor never complains. She remains a happy, positive girl who continues to inspire everyone she meets.

We are raising funds for two vital reasons:

    1    Mobility & Independence: The family urgently needs a Wheelchair Accessible Vehicle (WAV). In order to obtain a suitably adapted vehicle on mobility a £6,000–£10,000 upfront payment is required. This is essential for getting Taylor to her many appointments safely.

    2    Making Memories: If possible, we would like to send Taylor, her mum, dad, and her 10-year-old sister on a "dream trip" to DisneyLand. With the uncertainty of the future, we want to give them a chance to smile, laugh, and create beautiful memories away from hospital wards.

Our Gratitude:

We know times are tough for everyone, but any donation—no matter how small—will go directly toward making Taylor’s life easier and her smile brighter. If you are unable to donate, please consider sharing Taylor’s story and raising awareness of NPC.

Thank you for your love and support.

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