Struggling with an undiagnosed disease

OTSEGO, Mich. (NEWSCHANNEL 3) - When we are sick, we normally head to the doctor, who diagnoses us, gives us medicine and most of the time we go home and get better.

But just imagine living your entire life sick, without anyone ever being able to tell you what's wrong and without ever getting better. That's a reality for some.

Lorna Clugston is only twelve but already she's seen 210 specialists in her short life, and despite all that consultation, the little girl from Otsego and her family still don't know why she's sick.

"Just over the past twelve years we've had things added to her puzzle as I call it," said Amy Clugston, Lorna's mom.

The oldest of three children, Lorna was born full-term, bot only weighed four pounds thirteen ounces. Right away her mom noticed differences, unique ears that fold over, a small head, and a hole in her heart at about four months. Then gradual developmental problems, delays in speech and physical development.

Doctor after doctor failed to diagnose the problem.

"It's very frustrating, because as a parent you want to be able to help you child," said Amy.

Finally, that help may be coming. Lorna is one of 100 undiagnosed patients nationwide who were accepted into a program at Bethesda, Maryland where specialists from all over the world will look at her and try to find some answers. Lorna will undergo a batter of tests over a two to five day period.

"The unawareness, unknown, always lurking in the back of my head, it feels scary, not knowing what's causing all these symptoms," said Amy.

Knowing that there are others in the world who are also searching for a diagnosis also helps Lorna's family, giving them hope that a cause for her symptoms can be found and she can begin getting the help she needs.

"I feel like I will never completely give up, but I will often take a step back and see what's best for her," Amy said.

Right now it would seem that Lorna's best hope is to follow through with the undiagnosed disease program. She will be leaving for Maryland in the next month or so.