This November, Ed Shearer and I are joining the Movember challenge! For nearly a decade, I haven’t gone without my trusty beard, but it’s time to shake things up—and for a meaningful cause. We’re getting creative to raise awareness and funds for my firstborn, Jaxson.

If we’ve worked together, you might know some of Jaxson’s story. He was born during lockdown, and shortly afterward, we learned he has a rare genetic disorder called Prader-Willi syndrome. This condition brings over 40 challenging symptoms, including poor muscle tone, failure to thrive, sleep apnea, developmental delays, scoliosis, hyperphagia, sleep delays, and apraxia, among others.

At just four years old, Jaxson has already benefited greatly from vital therapies—physical, occupational, and speech—that are essential to his development. However, accessing these services isn’t easy; many require us to travel as far as London and Oxford for specialized studies. Unfortunately, the NHS has been unable to meet his needs, so we’ve relied on private funding, supported by the generosity of our community.

We are endlessly grateful for the help we've received and continue to fundraise to ensure Jaxson can access these therapies for as long as he needs. Jaxson is an incredible person, and everyone who meets him is struck by his resilience and joyful spirit. He truly inspires us all.

Thank you for taking the time to read this post. Raising awareness is key to creating a brighter future for everyone impacted by Prader-Willi syndrome.

If you would like to follow our story please see Jaxs Instagram page below

https://www.instagram.com/ourfamilyand_pws?igsh=d3dtdzN3aGw0ZWZw