Many know the Nehemiah of the Bible as a man with a burning love for people. In spite of a rare defect, six-year-old Nehemiah Dandy has just as much love for people.
Nehemiah has an extremely rare defect known as Angelman Syndrome, where he is missing his 15th chromosome. The condition is so rare that estimates for its prevalence range anywhere from 1 in 10,000 to 1 in 20,000, with no hard data on prevalence at all.
Angelman Syndrome causes severe developmental delays and most of those with the condition will never progress further than five to eight years of age with their development, but still maintain an average life expectancy. People with Angelman Syndrome are very limited in their verbal communication, if they are able to speak at all. They function on very little sleep, often times needing strong sleeping medications to sleep just four hours each night.
One characteristic of the condition that is immediately noticeable in young Nehemiah is his constant smile. In fact, it’s quite difficult to wipe the smile off of his face. He finds joy in literally everything he does, from riding his rocking horse to being mischievous like any other boy his age.
Nehemiah is being raised by his grandmother, Betsy Shields. It’s just the two of them, forcing Shields to function on the same amount of limited sleep as Nehemiah. But, according to Shields, she wouldn’t change anything.
“Raising Nehemiah is the hardest thing I have ever done, but it’s also the most rewarding,” Shields said. “Even if there was some miracle cure for his condition, I don’t think I would want it. Then he wouldn’t be Nehemiah.”
Shields is learning sign language alongside Nehemiah to help the two communicate. She uses positive reinforcement to help teach him, which is not lost on the ebullient youngster. Every time he does something good he claps and waits for everyone else to clap before taking a bow and flashing his “take a picture” smile, which is more irresistible than a tall glass of iced tea on a midsummer day.
Shields has helped care for Nehemiah from birth and has been his sole caretaker for the last three years. But, as he grows, she faces more challenges caring for him. Shields is on disability herself after a back injury prompted eight back surgeries. The best solution for Nehemiah is a service dog that is tethered to him. The dog can help keep him near Shields in crowded places such as a grocery store and can be trained to his scent so that, should he become lost, the dog can help locate him. Service dogs can be expensive, however, as some of them can cost close to $30,000.
Feeling as though she had nowhere to turn, Shields contacted the United Way of Greenwood and Abbeville Counties, where a case manager was able to find Shields some help. They also helped Shields find a place that Arizona, Service Dogs for Independence, that could provide Nehemiah a dog for just $8,000, which includes delivery of the dog and a three-day visit to teach Shields and Nehemiah commands for the dog.
Nehemiah’s dog is named Zeus and is a golden poodle, a mix of golden retriever and poodle. Nehemiah demonstrated on Shields how he would love on his dog once it arrives.
Shields made the initial down payment of $500 and an anonymous donor in Arizona added another $1,000, leaving the balance at $6,500. While Shields said she was determined to get the dog for Nehemiah, living on a fixed income makes it difficult.
Service Dogs for Independence accepts donations via PayPal and credit card. Checks can also be mailed to their office in Arizona. If you would like to help with the cost of Nehemiah’s dog, donation information can be found in the sidebar to the right.
For more information on Angelman Syndrome visit www.Angelman.org.
For more information on Service Dogs for Independence visit www.ServiceDogsforIndependence.com.