LIBERTY -- Childhood Alzheimer's -- a genetic disorder so rare that Brisan and Parker Stults were the first cases ever diagnosed by Children's Mercy Hospital in Kansas City, to the knowledge of the boys' parents. Only about 75 people are living with it in the country and 500 worldwide.
But it's daily reality for the children's parents, Mike and Jennifer Stults of Grain Valley. They also have another son, Duncan, 3, who does not have the disorder. Both Brisan, 6, and Parker, 5, have Neimann-Pick Type C (NPC), which has been referred to as Childhood Alzheimer's because of its gradual effects.
Because of NPC, the boys' body cells don't metabolize cholesterol and other fatty lipids, causing a progressive accumulation that chokes their brain cells. There is no cure. Most children with the disorder only live a few years.
Jennifer said she nearly passed out when she first heard the diagnosis in August 2008. "We would probably be lost if we didn't have our faith in God," she said. "I don't know that I could do the daily stuff if I didn't have faith."
Jennifer's grandmother, Celia Carnes of Kansas City, inspired her to action after the boys' diagnosis. "My grandmother told me I have two choices: I can wallow in despair and be of no use to my children, or I can pick myself up by my bootstraps and do everything I can to make their lives better," she said.
She said people have asked her if she's mad at God. "I don't think I've thought about turning my back on God," she said. "We have to believe our kids are dying for a purpose -- we just don't know that purpose. I am a firm believer in everything happens for a reason, and most of the time, it's not for my gain; it's for somebody else's.
"There could be another NPC family we could help in the future, or maybe my children's deaths will result in a new piece of information for doctors to gain a better understanding of the disease to help other children. I don't know what the purpose is, but I have to believe there is one."
Both said it's a struggle not to be bitter and angry with God. "I've been bitter at him," Stults said. "But God never said life would be easy. He has something bigger in mind, and I trust in him. He's provided. We've had no idea how to pay something and we get checks in the mail. We've been so thankful, we just cried."
Another reason to be thankful, they said, is that that their sons don't know they're dying. Their cognitive regression is such that they are like babies.
Jennifer, who cares for the children while her husband works in online advertising, takes online classes toward a degree in developmental psychology. They now have the assistance of a health aide.
In the early days of the diagnosis, Jennifer said she found support from other parents who have lost children at a grief support group offered at Pleasant Valley Baptist Church in Liberty. "Everyone who has lost a child is in the same boat," she said. "I have to deal with the fact that my kids are dying -- that's not normal. But my kids aren't dead yet."
That support group as well as the couple's community group (Sunday School class) at Pleasant Valley Baptist Church helped them during this difficult time. "They have been our main support," she said. "It's helped to remain close to them and have our friends to talk to, sometimes on a daily basis."
Their group has helped them with fundraisers, watched the boys, prayed, listened and loved them. "They come to birthday parties," she said. "We don't have a lifetime of birthday parties."
One day at a time, she said. That is all they can do with daily physical therapy sessions, seizures, hospital stays and trying to make their two-story home as safe an environment as possible for their children.
"If they're not in the hospital and they're not seizing -- that's a good day," Jennifer said. "I don't know life any other way. I have to try everything I can to get to have one more day with my children."
Their hope is for a cure. "It may not be in God's agenda," she said. "If it is, we'll praise his plans to heal them, and if not, we'll still praise him. They were his children before they were ours. The King always has one more move."
Both Mike and Jennifer said a lot of people are praying for them. And, they believe, prayer makes a difference. And they cling to their faith in God and the belief that there is a purpose.
Interested individuals can learn more about the Stults family and Niemann-Pick Type C by visiting the family website, bripardun.com and the National Niemann-Pick Disease Foundation at nnpdf.org .
The family also started the non-profit Niemann-Pick Children's Fund (npcfund.org ) to raise awareness about the disease.