Young Dingman learns she’s not alone
Hali Dingman had never seen anyone like her before.
That was until last week when the 6-year-old Baldwin girl went to the 24th Annual Family Conference sponsored by the National Foundation for Ectodermal Dysplasias. The conference was in Overland Park and Hali's mom, Janel Dingman, wife of city administrator Jeff Dingman, took her.
"Hali was so excited to be there," said Jeff Dingman. "It was so good for her to see that there are other kids like her."
Hali suffers from Ectodermal Dysplasias (ED), a genetic disorder that causes abnormalities in two or more derivatives of the ectoderm -- i.e. hair, teeth, nails and glands. The Compendium of Birth Defects estimates that one out of 10,000 babies born is affected by ED.
"Hali was diagnosed with ED when she was 3 days old," said Dingman. "He is 6 now. She can't go out in the heat. She can't perspire. The spike in her body temperature makes her get wild."
According to the NFED, ED physically affects people in five ways. They are:
- Scalp and body hair may be thin, sparse and very light in color, even though beard growth in affected males may be normal. The hair may be excessively brittle, curly or even twisted.
- Fingernails and toenails may be think, abnormally shaped, discolored, ridged, slow-growing or brittle. The cuticles may be prone to infections.
- The skin may be lightly pigmented. In some cases, red or brown pigmentation may be present. Skin can be prone to rashes or infections and can be thick over the palms and soles.
- Many individuals affected by ED syndromes can't perspire. Their sweat glands may function abnormally or may not have developed at all. Without normal sweat production, the body can't regulate temperature properly.
- Abnormalities in the development of tooth buds usually result in missing teeth or in the growth of teeth that are peg-shaped or pointed. The enamel may also be defective.
Hali suffers from all but one. Her fingernails and toenails are normal. Aside from the temperature problem, her dad says one of the more difficult things is diet. Because she has very few teeth, she can't really chew food.
Hali's condition calls for special treatment at school. She has attended part-time for the past two years and will be a first grader at Baldwin Elementary School Primary Center in the fall.
"The school district has been wonderful in working with us with Hali," Dingman said.
He said the conference was so helpful in so many ways. Parents of the children have activities and get to interact with each other while the parents are attending educational sessions
The NFED is a nonprofit organization in Mascoutah, Ill., providing services to families effected by ED syndromes. It was founded in southern Illinois by farmwife Mary K. Richter.
"I have no doubt that for many families who attended our conferences, the experience was life altering," said Richter. "For many of them, it was the first time seeing other individuals affected by ED and the first time they received extensive medical information on the conditions. For so long, they felt isolated and all alone in living with the condition. We help change that."
For more information on the condition or the organization, there is a Web site -- www.nfed.org.