While having visitors in Mount Airy is not unusual, one Roxboro family’s visit on Wednesday was a little different.
Judi Hummel’s 22-year-old son Randy Sierra suffers from a somewhat rare disease called Dandy-Walker Syndrome. Sierra “wears a diaper, does not talk, does not walk unassisted and is tube-fed,” explained his mother. In order to raise awareness about the disease, Hummel made a promise to herself and her son to walk for 20 minutes in each of North Carolina’s 100 counties.
At first she thought she could get that done in one year’s time, but as the year has progressed, she has found that it will be impossible in that time frame. They began walking in January and hoped to be done by his birthday in November. Now she has decided on a three-year goal.
“One of his skill-building goals is to walk every day for a minimum of 20 minutes. We are driving to each county, meeting an old friend or making a new one. We walk for 20 minutes talking about DWS and the effect it has on Randy and our lives. It usually takes approximately an hour. There is no money exchanged. There is no club to join. There is no fundraising at all,” said Hummel as she walked down Main Street with her son and daughter.
Hummel’s friend Joey Shipp of Winston-Salem came with them on Wednesday. This was his third walk with the family.
“The more people know about this disease, the better chance other DWS sufferers have to be diagnosed more quickly,” said Hummel.
Before coming to Mount Airy yesterday, the group stopped off at Hanging Rock State Park to walk in Stokes County. On the way home, they planned to stop in Rockingham County to walk.
Hummel said she and her daughter take care of Randy full-time at home. She said it was a comfort to her to find other parents through Facebook who were experiencing the same things as she and her family were. She urges those who want to learn more about the disease to look up the Dandy-Walker Alliance Facebook page.
There is also a Facebook page dedicated to the walk called Randy’s Walk Across North Carolina for those who want to learn more about her son’s condition. There is also a “Chip-in” page on that Facebook page where people can contribute as much or little as they would like to help the family continue their walk across N
Right now the family is visiting North Carolina’s counties on day trips. In order to visit all 100 counties, some overnight stays will be required.
“We will do whatever it takes to get the word out. This condition is so widely miss diagnosed because the symptoms vary with each patient. For example, Randy does not suffer from hydrocephalus but most others do. Randy is severely mentally retarded and developmentally delayed, but most others are not. We know a young lady who lives on her own, drives a car and is getting married, whereas Randy wears a diaper, does not talk, does not walk unassisted and is tube-fed,” said Hummel.
She said when her son was born 22 years ago, it took four years for a diagnosis. She said now doctors are able to diagnose the disease in the womb and get confirmation days after birth.
“Twenty-two years ago, one in 25,000 to 30,000 births were diagnosed now DWS and now it is one in 2,500 to 3,000. That’s huge progress, but we must learn more. We need more research. We must reach more people in the medical field as we can. We want to give as much hope as possible to those who are touched by this heartbreaking condition and to the miraculous children who endure it,” said Hummel.
Reach Mondee Tilley at firstname.lastname@example.org or at 719-1930.