JOHNSON CITY, Tenn. -

Serious medical problems are devastating for every family and when a child is involved it can be even more painful. Piper Smith and her family live in Johnson City; she has one out of three million with a genetic disorder.

She is just like all of the other kids in second grade; in fact, she is a standout. Piper Smith loves to sing, laugh and entertain.

But behind the happiness are some very dark days filled with pain and worry for her entire family. It started when she was three. "She has what's called SIOD,” her father Scott Smith said. “I call it Schmiskis. What it is, is immune deficiency along with bone issues. It’s a genetic disease. It goes all the way through her entire genetic makeup."

In the history of recorded medicine only 40 to 50 people have ever had this condition according to our research.

"This breaks you down to your core because nothing hits you like the reality that you might lose a daughter or a child,” Scott Smith said.

Piper loves to go to school as often as she can and hang out with her friends. We found her drawing a great white shark when we arrived.

She has also made one other special drawing that will always mean the world to her family it wasn't for herself. "I made this picture of a cross for mommy and I sleep with her every night,” Piper said. "It's above my head. I just made it for mommy so she could sleep better."

"When everything becomes too much, and my mind just can't comprehend,” Piper’s mother Pamela Smith said. “I remember Jesus getting on the boat and looking at the storm and the people around him and how scared they were. And he looked at the waters and said, 'Peace be still.'"

The Children's Organ Transplant Association is taking donations for children with various conditions like Piper’s as well as a host of other conditions. Click here to visit their website.

If you prefer you can ask to donate specifically for Piper or make a general donation as well.