CHALLENGES-David and Melissa Haupt keep an eye on their 16-month-old son, Elijah, who was born with a disorder that left him with no sweat glands. The boy has difficulty tolerating hot weather. Raising a child with a unique disability isn't easy, but Elijah's bright smiles and his loving nature make up for the day-to-day challenges faced by Moorpark residents David and Melissa Haupt. Their 16month-old baby boy was born with a rare syndrome that makes him unable to tolerate heat.

Elijah has hypohidrotic ectodermal dysplasia syndrome, an inherited disorder that affects the outer layer of tissue in a developing baby.

The syndrome comes in many forms and its impact is greater on some children than others, Melissa Haupt said. It affects about seven in 10,000 people.

The ectoderm is the outermost layer of the developing embryo, which gives rise to hair, teeth, nails and skin. More than 100 different ectodermal dysplasia conditions have been found. Elijah has the most common form of the syndrome, which may account for up to 80 percent of cases, according to the National Foundation for Ectodermal Dysplasias.

Elijah Haupt Because the boy's sweat glands didn't develop, he can't perspire and his body cannot regulate temperature properly. Overheating is a common problem, especially during hot weather.

Most ectodermal dysplasia conditions are also associated with sparse hair that has abnormal texture. Development of teeth is also affected.

Most of Elijah's teeth are missing and those that did develop are conical and sharply pointed, so he will need dental treatment throughout his life, Haupt said.

Other abnormalities associated with the illness include skin problems and nasal and respiratory issues.

Elijah is still on formula. So far, he can only eat bananas because he has severe food allergies and doesn't know how to swallow, Haupt said. The toddler's speech is also affected because his oral muscles aren't functioning well, given the lack of teeth. But Elijah is learning to speak and swallow with the help of therapy.

The physical obstacles haven't affected the boy's spirit. He's very bright and loves to socialize, the mother said.

"Nothing ever gets him down. He's a happy little boy who loves to play. Although he might cry while he has a problem, it never lasts," Haupt said.

Elijah's disposition is helpful for his parents, who must make frequent trips to the hospital for treatment and therapy.

Elijah would easily get very hot and break out with rashes and high fevers, but no one could figure out why until he was diagnosed when he was 6 months old. A visit to a specialist led to further testing and the unusual diagnosis.

Since then, the Haupts have been careful to ensure their son has a cool environment. The room temperature must be between 65 and 70 degrees to prevent fevers and other life-threatening conditions. Before the family can go to a restaurant or visit a public place, they must call to verify the facility has proper air conditioning.

"It's hard for my friends to understand he can't go to the beach," Haupt said.

A few weeks ago, Haupt called a radio talk show seeking help because she was concerned she might be forced to remove the extra air conditioner she'd installed on the house to keep her son's high fevers at bay. She hadn't received prior approval from her homeowners association

"It's unfortunate that the misunderstanding ever occurred, but as soon as the board of directors found out about the disorder, they were ready to work with the family on keeping the AC," said Neill Winner, property manager for Mountain Meadows.

When Denise Lopez, whose son Thomas also has a form of the syndrome, heard Haput's description of Elijah's affliction, she called the radio station to get in touch with her.

"I definitively feel for Melissa," Lopez said. "I've been there and I know what she's going through. Dealing with the symptoms of the disease is a daily hardship and it is originally overwhelming. But once you have a grasp on what the disease is, it's easier to manage it."

Thomas had high fevers that led to hallucinations and small seizures, but he wasn't diagnosed until he was 6 years old, the Simi Valley resident said.

Many children have some form of the disease, Lopez said. Thomas, who is now 12, has a mild form of the syndrome.

At first, doctors told Lopez that he might not survive infancy. While they treated his symptoms, health providers couldn't make a diagnosis because other ailments had similar symptoms, Lopez said.

After carefully reviewing her son's medical records and armed with the information that doctors had given her over the years, Lopez finally got a proper diagnosis for her son.

Delayed diagnosis can be dangerous, according to Lopez. Most individuals with ectodermal dysplasia have normal cognitive function, but a small percentage may have some degree of mental retardation because untreated high fevers can lead to brain damage.

Thomas and Elijah are both fine cognitively. Thomas currently attends private school and plans to become an engineer like his grandfather.

His prognosis is good, but he'll always need to be extra careful about heat and deal with other special problems triggered by the syndrome, his mother said.

Having learned how to control the symptoms and what to avoid

"the hard way," Lopez hopes she can help Melissa Haupt, who is just beginning her journey. The two mothers have spoken on the phone several times and plan to meet in the near future, they said.

For more information about the syndrome, visit www.nfed.org.