Faith In The Storm - Stults Family
(This was published in late 2008)
Faith in the storm
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. Only about 100 people are living with it in the country and 500 worldwide.
But it’s the new reality for the children’s parents, Mike and Jennifer Stults of Grain Valley. They also have another son, Duncan, 8 months, who does not have the disorder. Both Brisan, 4, and Parker, 2, 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 heard the diagnosis in August. ?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.?
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.?
Her 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.
Jennifer, 23, who cares for the children while her husband, 26, works as an Internet ad salesman, drives the boys to multiple therapy appointments during the week. She and Mike worked with his insurance to approve the use of a trial drug that may slow the progression of the disease. They recently learned insurance will pay for the drug, which for both boys amounts to $160,000 a year.
That was huge news for the Stultses, who also just learned that Brisan will need to start wearing a helmet because the condition is progressing to the point that he is falling too much and getting concussions. ?Up until this point, our sons have looked just like any other boys,? Jennifer said, choking back sobs. ?Now, it’s become even more real that things aren’t right with my sons.?
She said she has found support from other parents who have lost children at a grief support group offered at Pleasant Valley Baptist Church in Liberty, Mo. ?Everyone who has lost a child is in the same boat,? she said. ?It doesn’t matter how old that child was, it’s still the loss of a child.?
One day at a time, she said. That is all she can do. Daily physical therapy sessions. Seizures that are beginning to happen on a more frequent basis. Nursing a baby. Trying to make her two-story home as safe an environment as possible for her children. It’s all in day’s work as the mother special needs children.
?I don’t know life any other way,? she said. ?I have to try everything I can to get to have one more day with my children. We know there are lots of people praying for us.?
And, she believes, prayer makes a difference.
It has to.
As she finished sharing her story, sometimes through tears, she calmed her baby and told her boys ?night, night.? She doesn’t know how many more nights she’ll have with her boys. But each night is special. And she clings to her faith in God and the belief that there is a purpose, even for all of this.
She has to. It’s the only thing that gets her through each day – and night.
Learn more about Niemann-Pick Type C and Brisan and Parker
