Meet Jenson, a little boy who’s one in a million—or more accurately, one in 300 worldwide! Diagnosed with a rare condition called Phelan-McDermid Syndrome (PMS) combined with Ring 22, Jenson’s journey is both a challenge and a miracle. Born to Tom and Kimberley Giles, Jenson faced his first big hurdle at just two days old when he suddenly stopped breathing. After a nerve-wracking hospital stay, they got the news no parent expects—a diagnosis with no known cure.
At age four, Jenson might miss out on some developmental milestones, but his spirit is unstoppable. Despite his challenges, he’s making strides: standing with support, learning to communicate, and bringing immense joy to his family every day. While speaking isn’t on his list yet, his family is his biggest cheerleader team, soaring high with hopes fueled by the latest advances in gene therapy targeting PMS.
Tom, the father and sports agency founder, has taken his love to the streets, quite literally! Running nine marathons in nine days, he raised an astounding £25,000 for crucial research. The mission is clear: find treatment options to enhance Jenson’s life.
Tom’s dream? “To see Jenson walk and talk one day.” But until then, he says, “Our little warrior is perfect as he is, a constant bundle of joy.” He believes in staying positive, a life lesson Jenson embodies every day.
Let’s rally behind this incredible family and raise awareness about this condition. With your support, more families can come forward, share their stories, and contribute to finding a cure. Jenson is showing us all that love and determination know no bounds!