Dad’s Fight for Son’s Rare Condition – Cure Hope for 300
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Headline: Father runs nine marathons in nine days to help son with ultra-rare condition
Summary:
A father, tom, is raising money for research into Phelan-McDermid Syndrome (PMS), a condition affecting only around 300 people worldwide. His son, Jenson, was diagnosed with PMS after a tough start to life, requiring life support shortly after birth. tom ran nine marathons in nine days to raise funds for CureShank, a charity dedicated to PMS research, hoping for a cure or life-changing therapy for his son.
Key Details:
Condition: Phelan-McDermid Syndrome (PMS) – a rare genetic condition.
Cause: A mutation or deletion on the 22nd chromosome (specifically the Shank3 gene).
Symptoms: developmental delays, intellectual disability, potential for autism, and other physical issues.
Jenson’s story: Jenson collapsed shortly after birth and spent weeks on life support. He was later diagnosed with PMS. He didn’t smile, point, wave, or crawl during his early years.
Tom’s Efforts: Tom ran nine marathons in nine days to raise money for CureShank.
Hope: Tom hopes for a cure or therapy to improve Jenson’s quality of life.
Location: The family is from Bath.
Image Descriptions:
Image 1: Tom holding his four-year-old son, Jenson, both smiling at the camera. (Supplied by family)
* Image 2: (The second image is heavily corrupted in the provided text and cannot be accurately described.)
note: The provided text contains a lot of extraneous characters and formatting errors (likely from a copy-paste of HTML code). I’ve cleaned it up as best as possible to present a coherent summary.