Kasen's Hope: Family embarks on journey for disabled son
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BY JOE DUGGAN / Lincoln Journal Star
NEBRASKA CITY — The little boy holds his face a few inches from the light box in a darkened corner of the classroom.
Kasen Sipple’s underdeveloped optic nerves make him blind. But doctors believe he can tell light from darkness.
So the kindergartner’s day includes vision therapy. Working with the light box stimulates neural pathways so they don’t shut down from disuse.
Related Media
Journal Star reporter Joe Duggan and photojournalist Eric Gregory spent several months shadowing Kasen Sipple, a 6-year-old boy from Rulo who suffers from blindness, autism and a brain disorder. His family recently flew to China, where the boy will undergo a series of experimental stem cell treatments his parents pray will allow him to see. This three-part series explores a different kind of stem cell debate -- the lengths parents will go to help a disabled child and the power of hope.
Sunday: The family
Despite his disabilities, Kasen has a good life, thanks to the dedication of his parents and the care he has received from medical professionals, therapists and his family. Click here to read
Monday: The debate
Kasen’s treatment uses a type of adult stem cell, which frees it from the ethical debate surrounding embryonic stem cells. But it’s still controversial. Learn why some of the same researchers who trumpet the potential of stem cells say foreign clinics perpetrate fraud by offering therapies now. Click here to read
Tuesday: A therapy called hope
Medical and ethical debates take on a different dimension when you’re the parent of a disabled child. Amanda and Robbie Sipple show why they’re willing to spend a month in China, plus tens of thousands of dollars, for a treatment some experts say can’t work.
How to help
Send donations to the Kasen Sipple Stem Cell Fund, First National Bank and Trust, 1701 Stone St., Falls City, NE 68355.
You can learn more about Kasen’s treatments at his Web site, www.bignsite.com/angelsunaware
Besides blindness, Kasen has a brain disorder that disrupts the normal function of his pituitary and thyroid glands, which, in turn, causes him to grow slower than other kids.
In addition, he has autism and learning delays, which make it difficult for him to communicate.
Several weeks ago, Kasen started attending the Nebraska Center for the Education of Children who are Blind or Visually Impaired.
His teacher, Megan Gerdes, puts a multi-colored spinning disk on the surface of the light box.
The teacher praises him for keeping his eyes open. The boy’s fingers squeeze the gel-filled disk, but he doesn’t appear to be looking at it. Then the fingers travel to the top of the box, where they find the power switch.
“Do you need a break?” she asks. “Let’s turn it off and take a break.”
Kasen says in a perfectly clear voice: “I’m excited to go for a ride. We’re going to go for a ride.”
How right he is.
Eleven days later, on Sept. 29, he took a plane ride from Kansas City to Qingdao, China. His parents, Robbie and Amanda Sipple of Rulo, spent thousands of dollars to fly their family thousands of miles for Kasen to undergo a stem cell treatment not available in this country.
In fact, this country offers no treatments or cures for Kasen’s form of blindness. But a Chinese company called Beike Biotechnology does.
The company says all of the 30 or so American patients who have received stem cell treatments for ocular nerve blindness in the past year have gained varying degrees of vision.
The Sipples decided to go to China, at a cost of about $40,000, in the hope their son can gain his sight.
They embarked on the journey despite withering criticism from American doctors and researchers who call the stem cell treatments a fraud. Western medical experts say no independent scientific research proves the treatments work as advertised.
Families like the Sipples are wasting their money, the experts say. They’re misplacing their hope.
A hope embodied by a little Nebraska boy who turned 6 the day he left for China.
Ready to Go
Back at his family’s home on the banks of the Missouri River, Kasen goes to his room for what his father calls “a little alone time.” After a day of stimulation, the boy sits by himself, listening to music.
Out in the kitchen, Kasen’s younger brothers keep their mother busy. Three-year-old Kamden bounces around the trailer home, blurting a nonstop stream of questions and observations. Kyler, the 1-year-old, crawls on the linoleum until finding a drawer or chair to pull himself upright. He’ll be walking soon.
The couple decided to take all three boys to China because they’ll be there for a month while Kasen undergoes treatment. Janet Beach, Amanda’s mother, will go with them to watch the younger boys while the parents are at the hospital.
“If he starts to get vision, we want everybody there,” Amanda explains.
Of course, bringing the family increases the cost of the trip. They paid nearly $10,000 for airfare for the six. They budgeted an additional $5,500 for a month’s lodging in a hotel, food and unforeseen expenses.
Two sheets of paper, taped together lengthwise, constituted the list of everything they will need in China. The family will live in a hotel until the end of October, so they packed as many instant oatmeal packets and goldfish crackers as they could.
Kasen will undergo six umbilical cord blood stem cell infusions, most through a spinal tap. The fluid injected into the boy also will contain neural growth factors and cord blood serum, which the company says gives the stem cells a boost.
The Sipples have already paid $24,000 for the treatments. And they’re looking at another $25,000 to rent a hyperbaric oxygen chamber when they return to continue a holistic care regimen.
That puts the total at about $65,000.
In the past year, friends and family held soup suppers, auctions, motorcycle poker runs and even a demo car raffle to help defray the costs. They raised about $25,000, the couple says.
They will borrow the rest from relatives.
The family lives modestly. Robbie works as an independent marketing director for a merchandise club. Amanda is a stay-at-home mom.
Medicaid pays for some of Kasen’s health care costs, private insurance covers some and the rest comes out-of-pocket.
But Medicaid and private insurance won’t pay for the stem cell treatments. So they will have to pay every cent of the $65,000.
For now, they won’t worry about the money.
They’re focused on the treatment.
They want it to work.
They believe it will.
Keeping Hope
Robbie and Amanda know experts say the treatments can’t cure Kasen, but they say the experts must open their minds. After all, practically every scientifically acceptable cure once was an experiment.
“I’m going to love the day when I can go up to some of these doctors when thousands of kids have been cured and I can see the looks on their faces when they’ve been proven wrong,” Amanda says.
Experts fail to realize that even small improvements make big differences in the lives of disabled children and their families, Amanda says.
Besides, the couple accepts the possibility the stem cells won’t work.
“I’ve come to the realization that there’s no reason to feel sorry for him,” Amanda says. “Because he doesn’t know any different. He already has a good life.”
She would rather see the treatment fail now than wonder in the future if they should have done something more.
What the couple can’t accept is doing nothing.
They won’t give up as long as something promises to help Kasen live a more normal life.
What if the stem cell treatments deliver on their promise in ways no one understands right now?
“The worst thing that could happen is it doesn’t help,” Robbie says. “But we can’t not try. With the improvement rates it has and the hope it gives you, you can’t not try.”
After a dinner of soft shell tacos, Robbie gives the boys their baths. Kasen goes first, then Kamden and Kyler.
Afterward, the whole family ends up in Kasen’s room. While Kasen doesn’t interact with his brothers, he also doesn’t throw a fit, something he would have done before.
Finally, Robbie chases the younger two out of the room, leaving just Kasen and his mother to share a few moments before bedtime.
She sits crossed-legged on the floor and pulls her oldest son close.
The same boy who sometimes wakes her at 4 a.m. by playing “We Will Rock You” on his CD player.
The boy who squeals with delight when she splashes him with a garden hose on a summer day.
The boy who loves to cuddle and be held.
She holds him now and smiles.
So does he.
Reach Joe Duggan at 473-7239 or jduggan@journalstar.com.
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God Bless your endeavor wrote on October 7, 2008 8:42 am:
BLS wrote on October 7, 2008 9:12 am:
Too Bad wrote on October 7, 2008 9:27 am:
Where can people donate money to this family and help them with their expenses? That would be a great addition to the story. "
Good Luck wrote on October 7, 2008 9:49 am:
to too bad wrote on October 7, 2008 10:17 am:
hopeful wrote on October 7, 2008 10:26 am:
too bad - there is an address in the box below the picture that gives you info on donating to the family. "
LynnSue wrote on October 7, 2008 10:29 am:
Our prayers are with you. "
Dano wrote on October 7, 2008 10:49 am:
I hope they prove the arrogance of the experts wrong. "
Wow wrote on October 7, 2008 11:01 am:
Awesome wrote on October 7, 2008 11:03 am:
Kris McAllister wrote on October 7, 2008 11:48 am:
b s wrote on October 7, 2008 12:16 pm:
AD - dont hate physicians wrote on October 7, 2008 12:20 pm:
Jamie wrote on October 7, 2008 2:54 pm:
Mike in Lincoln wrote on October 11, 2008 1:53 pm: