Cozy Care for Children Battling Coats’ Disease
Karen Franklin was diagnosed with Coats’ Disease at 10 years old and, as many others before social media, grew up without knowing anyone else with Coats’. Once she joined Facebook®, she sought out Coats’ groups and read many posts from parents whose children had been recently diagnosed. It was then Karen decided to help comfort Coats’ Disease patients from the anxiety, emotion, and pain accompanying the disease.
That desire turned into Coats’ monkeys. A little more than three years ago, Karen and a Coats’ mom (Karen Moran) came up with an idea to make sock monkeys. Karen had never sewn, but with encouragement and a few monkeys from Karen to kick-start the campaign, she bought a sewing machine and started on quite the journey with the perfectly imperfect monkeys.
Each monkey incorporates the recipient’s favorite colors or hobby. The child’s Coats’ eye is represented by a heart which signifies “The Glow.” And, there is a naming convention to all this. The original Coats’ monkey was named Uno and subsequent monkeys have been named for the child who received the previous monkey. This way, the children are comforted knowing that others are on the same journey. The monkeys comfort children and, more so it seems the parents, who endure the anxiety of Coats’ Disease by accompanying them to treatments, exams and other appointments.
Seven-year-old Andres, who was diagnosed with Coats’ Disease five years ago, poses with “Luca.” Luca features Andres’ school’s soccer team colors.
One monkey turned into many and then, before Karen knew it, a Coats’ monkey cult, of sorts, transformed. In early 2015, two Coats’ moms (Rochelle Varney and Nancy Payton) joined Karen, and the monkeys multiplied.
Karen personally delivering “Collin” to Shiven in Washington in January 2015.
The Coats’ Monkeys project promotes its work via Coats’ Disease-oriented Facebook groups and word-of-mouth. When a monkey is complete, it is shared within the Facebook community with well wishes for its owner. Each of these Facebook posts has garnered new requests for monkeys. Currently, there are about 30 to 40 children on the first-come, first-served waiting list.
Karen used her personal funds to create and distribute the monkeys until her sister surprised her by developing a GoFundMe® in October 2014. Karen states that she is grateful for the love and ambition of Rochelle, Nancy, and the generosity of all who have donated. Without them, the monkeys would not have reached so many children. Karen and her team plan to reach children with other Glow-related diseases while maintaining a close connection to each monkey produced and the children they serve.
Nancy Garrett-Payton and Karen Franklin are pictured while being interviewed about Coats’ Disease and FSHD by the local newspaper in Puyallup, Washington. Karen flew from Tampa to meet Nancy, attend the FSHD Gala, and bowl with several Coats’ families in January 2015.
“This is such a meaningful project for all of us. We want to make sure that we continue to comfort additional children while keeping Coats’ monkeys special and personal,” Karen said.
Learn more about the Coats’ Monkey project by visiting: http://www.gofundme.com/CoatsMonkeysRule.