Grain Valley family fights to find a cure for rare disease

GRAIN VALLEY, Mo. - When you hear the word dementia or Alzheimer's, you think it’s always associated with older people. But children can experience some of the same symptoms as a result of a number of rare diseases. Niemann-Pick Disease Type C is one example.

“It causes those normal cells to basically deteriorate which causes in the brain -- the dementia, the loss of mobility, the loss of speech, the loss of swallowing, and the loss of the memory. They don't have any short term memory. It's about five seconds long. They no longer talk. They no longer walk. They have feeding tubes,” explained Grain Valley mother of three Jennifer Stults.

She has two sons, 7-year-old Brisan and 5-year-old Parker, who were both diagnosed with the rare disease three years ago.

“I have a mutation and Michael; there is a one in a 150,000 chance that each of us will have that mutation. And then us meeting together with each pregnancy, we have a 25 percent chance of having a child affected and we have two,” said Jennifer Stults.

She also explained just how rare the disease is -- there are only about 50 cases in the United States.

She said doctors only expect her boys to live less than two more years. They don’t expect them to live to dance at their senior prom.

“At the rate things are going, we absolutely don't expect something like that to take place. We frankly don't expect it to be middle school. They both have a beautiful smile and I know one day those smiles are going to go away,” said father Michael Stults.

Doctors said the family’s youngest son does not have symptoms.

“Duncan, who is almost 4, is a carrier of my mutation so when he decides to get married and have children, we will have to test his wife to make sure she is also not a carrier so we don’t have to go through this hell that we are going through,” said Jennifer Stults.

Right now, the parents let the children do whatever makes them happy.

“We just kind of love on them as much as possible and don't take for granted that they might not be here tomorrow,” said Stults.

The family said even though research can’t find a cure in time to help Brisan and Parker, they want to raise awareness to hopefully one day find a cure.

Friday night, the Niemann-Pick Children’s Fund held their first official fundraiser, but the Stults said this is only the beginning.

“It's hard but if we could save another kid, it's worth it,” said Jennifer Stults.

She said she will fight for a better future for other children.

To learn more about the disease and Niemann-Pick Children’s Fund, Inc., http://www.npcfund.org/