Ready for some blindfolded breakfast? The Root family is challenging you to try the Cereal Challenge to raise awareness for their son’s condition. Zachary Root, an 8-year-old boy from North Caldwell, was diagnosed at age 3 with an Ashkenazi inherited syndrome, Usher 1F. Usher Syndrome is a rare genetic disorder that causes balance issues, deafness and gradual blindness in those affected.
Because of Usher 1F, Zachary was born completely deaf, but is able to hear and speak with the help of cochlear implants, which he got as a baby. He was also born with “night blindness,” an inability to see at night or in low light; and was late to sit, stand and walk because of balance issues. While his central vision is still 20/20, Zachary is slowly losing his peripheral vision, which will progress to tunnel vision and eventually total blindness due to retinitis pigmentosa, an accumulation of pigmented material on the retina, from Usher Syndrome.
Despite these challenges, Zachary is a happy, sweet kid who loves his family, school, art, and playing with Legos. His parents, Jared and Rachel Root, started the Cereal Challenge to raise awareness of Zachary’s condition and to raise money for Usher 1F Collaborative, a small, parent-run nonprofit that funds medical research to find a way to save or restore the vision of those suffering from Usher 1F. Jared and his college friends came up with the idea for the challenge with Zachary. They were looking for a COVID-safe fundraising project that would demonstrate the struggles of living with Usher 1F and be personalized for Zachary, whose favorite food is cereal. Some of Jared’s friends tried the Cereal Challenge themselves and it took off; and cereal companies have now joined forces with them.
The Root family would love for everyone to take the Cereal Challenge and help spread awareness about Zachary’s condition. Try to make yourself a bowl of cereal while wearing a blindfold to experience the challenges of living without sight due to Usher 1F, and then challenge someone else to do it, too. To learn more about Usher 1F, visit www.usher1f.org; to donate for the Cereal Challenge go to www.usher1f.org/cereal-challenge.html.
By Shira Kosowsky
