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I have known Maddi for years, being in the same class as my brother in school our families quickly became good friends and my mum is now one of the Trustees of The Maddi Foundation.

When Maddi turned 14, she suddenly developed a limp but it wasn’t bothersome at all. Within a matter of a few months, things began to change, she struggled with her walking and kept falling over.

Maddi and her family had no idea what was going on, they had her assessed by neurologists at Great Ormond Street Hospital, London. After having an MRI scan, it revealed anomalies in her brain. The doctors, were uncertain of what the cause of these anomalies were so began to investigate more to find out. Further tests were done to see if there was a genetic cause, anxiously waiting weeks as Maddi underwent rounds of DNA testing at the Hospital. Maddi was then diagnosed with SPG15.

We learned that SPG15 is a neurodegenerative disease which can cause severe disability, Spastic Paraplegia in all the limbs and being confined to a Wheelchair in the early years. She could develop Juvenile Parkinson’s as the disease slows down the brain and degeneration in her eyesight! We were told there was NO cure! At any time her life can be cut short.

Me and Jerrel are wanting to raise money for Maddi so that the research into SPG15 and finding a cure can continue. To watch an active young girl have her life completely turned upside down is heartbreaking to watch

Anything you can donate will be greatly appreciated.

Love Syd and Jerrel

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