Before Sonia and her son José set off on Peru’s Inca Trail this September, their guides gave the group two goals: survive first, and finish if you can.
For Sonia and José, finishing mattered. They were hiking in honor of Jack, Sonia’s son, who lives with Angelman syndrome, and raising money for research through FAST’s Run the Distance program.
Jack has an infectious laugh and a love of helium balloons. He does not use spoken language, but he has his own ways of communicating what he wants and needs. When he wants comfort, he takes someone’s hand and leads them. He also lives with many of the challenges that come with Angelman syndrome, and his family has spent the years since his diagnosis looking for ways to help move research forward.
Run the Distance has given them one way to do that by making the miles they are already taking on count for FAST.
Sonia has taken on a few of those challenges herself. In 2023, she ran the London Landmarks Half Marathon, and her partner Michael later completed the London Marathon. This year, Sonia and José decided to tackle something very different. The Inca Trail would take them 42 kilometers through the Andes over four days, climbing above 4,200 meters on their way to Machu Picchu.
Honestly, it was an experience of a lifetime,” Sonia said. “We had absolutely every type of weather, beautiful sunny days, rain, and some really strong winds! And to top it off, José and I both got eaten alive by mosquitoes.
It was also much harder than she expected.
If I’d known beforehand just how hard it was going to be, I’m not sure I would have felt prepared for it!
But they kept going. Four days later, Sonia and José reached Machu Picchu and, along the way, raised more than £1,300 for Angelman syndrome research.
She also came away from the hike with a perspective that will sound familiar to many families living with Angelman syndrome.
The mountain we climbed in Peru was physically challenging. But it is nothing compared to the mountain families like ours climb every single day.
For Sonia and her family, fundraising is one way to keep pushing that work forward. Money raised through Run the Distance helps support FAST’s work to advance research toward treatments for Angelman syndrome, including the science, tools and studies needed to keep promising programs moving.
Make Your Miles Count for FAST
You don't need a mountain or a race to take part. Run the Distance lets you turn the walking, running or hiking you already do into a fundraiser for Angelman syndrome research.