Archive for Robin sequence
Guided by her own experience, one mom navigates Stickler syndrome with her children
Aimee is more than just Mum to three-year-old Arwen and one-year-old Cedric; she’s their guide to navigating Stickler syndrome, a genetic connective tissue disorder that can cause an underdeveloped jaw and airway obstruction (collectively known as Robin sequence), as well as cleft palate, vision and hearing difficulties, and other findings. As a carrier herself, Aimee ... Read More about Guided by her own experience, one mom navigates Stickler syndrome with her children
How Robin sequence paved a dad’s road to the Boston Marathon: Chad and Izzy’s story
Go to any marathon starting line and you’re bound to find someone who was “never a runner” until something — or someone — motivated them to tie up their laces. Chad Goyette is one such runner. But today, he’s fresh off the Atlanta Marathon and gearing up to run Boston. His inspiration? His daughter, Izzy. ... Read More about How Robin sequence paved a dad’s road to the Boston Marathon: Chad and Izzy’s story
Miles for Jack: Robin sequence and the bond between a family and doctor
For runners and non-runners alike, next week’s Boston Marathon is extra special. It marks a beloved tradition for the city, and for many, it’s a chance to once again run for those who can’t and bring awareness to causes worth fighting for. For 6-year-old Jack Ryan, this year’s marathon is a chance to cheer on ... Read More about Miles for Jack: Robin sequence and the bond between a family and doctor