- Associated Press - Tuesday, February 3, 2015

LIBERTY, Mo. (AP) - Jennifer and Michael Stults have buried the second of their three sons. Parker, who died at home last month, was 9 years old.

Last March, the young Kearney couple buried their eldest son, Brisan. He was 9½, The Kansas City Star (https://bit.ly/1ye1IfF ).

“The house is eerily quiet now,” said Jennifer Stults, 29.

For the great majority of the boys’ lives, the Stultses knew this would happen, even as they prayed that God and medicine might forestall it. In 2008, Brisan and Parker, then ages 4 and nearly 3, were diagnosed with an extremely rare genetic disorder, Niemann-Pick Disease Type C, thought to affect about 500 children in the United States.

Unbeknownst to them, the Stultses were both genetic carriers for the disorder, which gradually causes cholesterol to build up and become trapped in the cells of the liver, spleen, lungs and brain until the organs no longer work.

What’s remarkable about the Stultses, said those who know them, is that even as the family dealt daily with their own children’s incurable disorder - watching the boys gradually lose the ability to walk or talk or feed themselves as cholesterol built up in their brains, while also robbing them of their short-term memories - their sons inspired them to help others.

About six months ago, the family took a 3-year-old girl, the first of two foster children, into their home. The second, an 11-month-old girl, came only a week before Parker’s death. And it was just shortly before Christmas that the Stultses delivered some 600 boxes of facial tissues that they and friends had collected to the chapel at Children’s Mercy Hospital for use by parents like them.

The idea came to Jennifer Stults, she said, as Brisan lay dying in the hospital.

“Brisan’s death was traumatic, borderline unbearable,” she said. She remembered wiping her tears away with rough tissues.

“When I get upset, I can get really sarcastic,” she said. “That’s totally what happened. I remember thinking, ‘You would think that when your kid is dying, they could give you a good box of Kleenex.’”

Brisan, born in August 2004, died March 4, 2014. The Stultses and their friends collected tissues over the subsequent months, sharing the story on the family’s website. They placed a sticker on each box bearing the name “Pete’s Puffs,” with a message along with a logo of Brisan’s beloved stuffed animal Pete, a floppy-eared dog. The family plans to continue the effort.

The sticker reads:

“Hi, my name is Pete. My best friend Brisan Stults spent many days and weeks in Children’s Mercy. Sadly, my best friend is no longer able to love on me; but when he was here, I was a soft comfort and lovey. I am so sorry you are needing a soft tissue right now. Brisan’s family and friends could really of used a soft tissue the night that Brisan went to Heaven. So in honor and love of Brisan Stults please accept these tissues. Our thoughts and prayers are with your child and family during this rough time.”

“Our families are amazing,” said Children’s Mercy spokeswoman Jessica Salazar. “Even when they are going through their darkest hours in the hospital, we have families like Michael and Jennifer who make time and effort to make another family’s time here more comfortable and peaceful.”

The Stultses are far from wealthy people. Years ago, as the economy turned bad, they talked of filing for bankruptcy because of medical and other bills. For a number of years, the family put together an annual fundraiser to help defer costs and raise awareness of Niemann-Pick. Eventually the family’s financial footing became more sound as Medicaid picked up the cost of the boys’ expensive medication. Michael Stults, 32, recently began working for a marketing firm.

“People say, ‘How do you get through it?’” he said. “There is no road map.

“It is people praying for us, with love and kindness and affection. We just loved our boys. As a parent, you wake up every day and you give unconditional love. You get up and do it again.”

The Stultses have a third son, Duncan, who turned 7 last month. Although genetically he is a carrier for Niemann-Pick Type C, he will not suffer the disorder. Jennifer Stults said that as Brisan and Parker grew older, she would explain to Duncan that his older brothers would one day go to heaven while they were still young, but that they would feel better and be able to laugh and play.

When Parker died, Jennifer Stults said Duncan responded, “Well, he is going to be with Brisan.”

“From our perspective, we know Christ is strong in their hearts,” said Jim Landers, associate pastor of the family’s church, Pleasant Valley Baptist in Liberty. “They love the Lord. Out of that, they have a real sense of victory there. There is a profound loss and sadness, but Mike and Jennifer would tell you that this is a victory, too. …

“Even though they have had their own struggles, I think it gave them a real compassion for other kids who needed care, too.”

The Stultses said they began the process to become foster parents two years ago, even as their sons began to fall increasingly ill. Jennifer Stults said she and her husband had always wanted a large family but didn’t think it was medically responsible “to keep having babies knowing that they could potentially have this disorder.”

“I have wanted to adopt since I was little and did mission work in an orphanage in Romania,” she said.

Because each parent carries a recessive gene for Niemann-Pick, the odds are 25 percent that a baby would be born with both genes and thus be afflicted. There is an equal chance that a baby would carry no genes and be unaffected. Odds are 50 percent that a baby would be a carrier like Duncan or themselves, meaning the child would not have the disease, but could pass it on.

The Stultses are foster parents who would, one day, like to adopt.

Right now, they are grieving, missing their two boys and unsure what lies ahead.

“These kids are just as needy, you know?” Jennifer Stults said. “They come from some really lost backgrounds, rough backgrounds. My boys didn’t have a choice (of what befell them). We didn’t have a choice. These poor babies, they didn’t have a choice.

“You can’t save them all, but maybe we can save a few.”


Information from: St. Joseph News-Press/St. Joe, Missouri, https://www.newspressnow.com



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