Touch the Horizon

Perhaps  what inspires and motivates me most about Brian and Brandy is they have never been able to prepare for the hand they have been dealt.  They have persevered through amazing sorrow with beauty and grace.  The story told last fall (and reprinted below with permission) was merely the beginning.  It is amazing to see the strength of this family.  They truly “Touch the Horizon” each and every day with an unequaled elegance.

                 From HeraldTimesOnline.com                    

HeraldTimesOnline.com

‘I could not stop thinking about this family’
Firefighter Ron Bateman training for Oct. 13 ultra-marathon to raise funds for Krebbs family, coping with sick child

Ron Bateman, a firefighter with the Bloomington Fire Department, rear, will be running 100 miles to raise money for Silas Krebbs, 2, and his family Brian and Brandy Krebbs and his 8-year-old brother Jacob. Chris Howell | Herald-Times » buy this photo

Ron Bateman says he was “deeply moved” when he read several Herald-Times stories about the ongoing struggles of Brandy and Brian Krebbs, a Bloomington couple who lost a daughter to a rare disease that is now threatening the life of their youngest son.

Lauren, the Krebbses’ only daughter, died in 1997 — two weeks shy of her third birthday.

Doctors believe the disorder that claimed her life is mitochondrial disease, a hereditary problem that prevents cells from converting food into energy.

Now the Krebbses’ nearly 2-year-old son, Silas, is battling the same disorder.

“As I read those articles I could not begin to imagine the heartache Brandy and Brian must be feeling,” said Bateman, a Bloomington firefighter. “I could not stop thinking about this family.”

Last February, Bateman gave the Krebbses a call. He asked if he, his wife, Rosanna, and their two children — Miranda, 9; and Garrick, 6 — could meet them. The Krebbses invited them to dinner.

“I told them that ever since I ran my first marathon two years ago I’d wanted to run something even longer, and do it to raise funds for a good cause,” he said. “I said I wanted their family to be that cause.”

The Krebbses were flabbergasted by the offer.

“He has a huge heart,” Brandy said. “Brian and I are in awe and appreciative beyond words. He doesn’t know us or go to our church, but he’s a true example of what it means to be a Jesus follower.”

Aware that several fundraisers had already taken place to help pay for Silas’ medical costs not covered by insurance, Bateman decided he wanted his fundraising efforts to benefit the Krebbses’ healthy, 8-year-old son, Jacob.

“I felt Jacob had gotten lost in the shuffle,” he said. “I wanted to do something for him.”

When Bateman learned the financial strain of caring for Silas had forced the Krebbses to pull Jacob out of the Lighthouse Christian Academy, a private Christian school, he asked the Krebbses to use the funds he raised to pay Jacob’s tuition and registration fee — $3,800 — for a full year at the school.

“This is not an indictment of the public schools, because my kids go to public schools,” he said. “But I know Jacob excelled at that school and really liked it there. I just wanted to restore some sense of normalcy to his life.”

Brandy said Jacob did indeed love Lighthouse Christian Academy as a kindergartner, but struggled as a first-grader in two different public elementary schools. She’s now home-schooling him, but because most of her days are spent caring for Silas, she feels Jacob would get a better education, and be happier, in the academy.

“He loves that school,” she said. “He’s always saying, ‘I miss Lighthouse; when can I go back there again?’”

Going the extra ‘miles’

Though the 35-year-old Bateman has run three 26.2-mile marathons, he plans to run 100 miles for Jacob in the Heartland 100 Ultra Marathon near Wichita, Kan., Oct. 13. With the help of his support team — his wife and his father, Richard — Bateman will traverse the undulating Flint Hills of southeastern Kansas.

“I’ve never run an ultra-marathon before, so this is a big jump into the unknown for me,” said Bateman, who’s been running 80 miles a week to prepare for the race. “But Brandy and Brian believe all things are possible. They are giving me the confidence and inspiration that I can do this.”

Bateman said people can help by writing a check made out to “Krebbs Family” and dropping it off at any Monroe Bank in Bloomington, or mailing it to Monroe Bank, 2600 S. Henderson St., Box 204, Bloomington, IN 47401. For more information, visit Bateman’s Web site at www.touchthehorizon.org.

“This fundraiser is such a blessing,” Brandy said. “Brian (a brick mason) has been working some extra hours on Saturday, but we ran out of the money raised at the previous fundraisers last March.”

Silas thriving

Though Silas’ disease is considered terminal, Brandy said he’s been thriving since coming home from the Riley Hospital for Children eight months ago.

“He’s a big boy,” she said of Silas, who will turn 2 on Sept. 26. “He weighs 35 pounds, and is in the 95th percentile for kids his age in both height and weight.” He still takes medications to prevent seizures, but doctors plan to reduce his dosage because he has not had a seizure since he’s been home.

Brandy spends hours with Silas each day doing physical, developmental and occupational therapy.

Silas does not yet crawl, but Brandy said in recent weeks he’s started giggling, rolling over, lifting his head up when he’s on his tummy, and pounding his play piano

Mom: 'I couldn't handle the thought of losing him, too'
Parents worry 1-year-old son may have same disease that killed his sister nine years ago

Brandy and Brian Krebbs with Jacob, 7, and 1-year-old Silas. The couple lost a daughter nine years ago to a mysterious illness, and they now worry Silas may have the same disease. Courtesy photo

Brandy Krebbs is trying to maintain a strong exterior. But inside the walls are crumbling.

"My husband, Brian, says as long as he sees me coping OK, he can handle it, so I try to appear strong," said Brandy. "But inwardly, I'm really struggling."

A rare disease that took the life of the Bloomington couple's daughter now may be threatening the life of their youngest son.

Lauren was the name of the Krebbses' only daughter. She died in 1997 at the Riley Hospital for Children, two weeks shy of her third birthday.

She'd entered the hospital with puzzling symptoms - seizure-like muscle spasms on the right side of her body that baffled her doctors.

"They ran dozens of tests on her over a period of two months," Brandy said. "Before they could make a diagnosis, her pancreas hemorrhaged, and she died."

Brandy described Lauren as a compliant, easygoing child who loved to laugh.

"When she died, we were completely lost," Brandy said. "We said goodbye to her at the morgue, then went home to a house that was silent and empty. It was agonizing beyond description."

 

Will lightning strike twice?

A month ago, the Krebbs' 1-year-old son, Silas, began showing symptoms similar to the ones Lauren had.

"One night, he started having muscle spasms in his right shoulder," said Brandy. "My gut told me it was the same thing that killed Lauren."

Brandy took him to a Bloomington pediatrician, who said Silas might indeed be suffering from the disease that had stricken Lauren.

With reruns of Lauren's death playing in her head, Brandy broke down.

"I didn't see how I could deal with this all over again," she said. "Losing Lauren was devastating. I couldn't handle the thought of losing him, too."

Silas was examined by a Bloomington neurologist, who said Silas' unexplained muscle jerks might be caused by mitochondrial disease - a hereditary disorder that prevents cells from converting food into energy, thus hindering their function.

The neurologist sent Silas to Riley, where doctors gave him a battery of tests over a two-week period.

"They told us they suspected it was mitochondrial disease, and that Lauren had probably died from the same disorder," Brandy said. "But they wanted us to see a world-famous neuromuscular specialist at the Children's Hospital in Atlanta so we could get a definite diagnosis."

For the past three weeks, Silas has been home, under the watchful eye of Brandy and her mother. He receives nourishment through a feeding tube and takes medications to control his muscular spasms.

"The doctors told us they can't do anything more for him right now," she said. "So far he's doing fine."

 

Need to raise money

The Krebbses plan to take Silas to Atlanta on Oct. 31. But between now and then, they must raise between $10,000 and $15,000 to pay for their flight, lodging and tests that won't be covered by their insurance.

Though Brandy this week began a part-time job at Oliver Winery to supplement Brian's salary as a brick mason, they don't have the needed funds.

Their church - Ellettsville House of Prayer - is planning a series of bake sales, car washes and other fundraisers on their behalf.

 

Faith being tested

"Our faith is pushed to the limit every single day," said Brandy, in whom hope and despair wage a daily battle for supremacy. "But we know God is in control, and that he loves Silas."

Brandy said her spirit keeps hearing a verse from Psalms - "Be still and know that I am God."

"But it's still hard not to question God," she said. "Every day I ask him to put me in his hiding place and hold me in his arms."

Brandy cannot talk about Silas without a rush a raw emotion.

"It's the not knowing," she said. "We're always wondering whether he will suddenly take a turn for the worse like Lauren and die."

Inside the hearts of parents is a fertile place where dreams about their child's future grow. The Krebbs, despite the possibility of losing Silas, refuse to let that place become dry and cracked.

"When I look at Silas, I pray that he will one day be able to tell people he was a boy who was not supposed to live, but by God's grace, he's grown into a healthy man," she said. "My dream is to see him become whatever he wants, maybe even a minister."

 

 

Family praying for a miracle after boy's diagnosis
1-year-old Silas Krebbs has mitochondrial disease, same disease that killed his sister

Brandy and Brian Krebbs suspected their 1-year-old son might have a terminal illness.

Now they know for sure.

The Bloomington couple recently received the sobering news at the Baylor College of Medicine in Texas, where little Silas was officially diagnosed with mitochondrial disease.

The hereditary disorder, which prevents cells from converting food into energy, claimed the life of their 3-year-old daughter, Lauren, in 1997.

"It's a death sentence," said Brandy, Silas' mother. "The doctors said his life expectancy could be three years, or maybe as many as 12. No one can say for sure."

Doctors have said the medications being used to treat his disease will eventually cause his liver to fail.

"He would not be a candidate for a liver transplant," she said. "If someone with mitochondrial disease gets a transplant, it causes the other organs to fail - and they die shortly after."

But the Krebbses, members of the Ellettsville House of Prayer, are praying for a miracle.

"The doctors have no hope to offer us, but Jesus is the great physician," Brandy said. "We are not giving up."

 

Funds still needed

The Krebbses had been asking people to donate funds to help them fly to the Children's Hospital in Atlanta, so Silas could be diagnosed there by a world-renowned neuromuscular specialist.

Now that Silas has been diagnosed at Baylor, they've canceled that trip.

But the $4,100 people donated will still be used to help the family with Silas' medical expenses and therapies.

Brandy said their health insurance has denied Silas coverage, saying his condition was pre-existing.

They recently filed for Medicaid disability, but it will not cover all of Silas' medications, therapy toys and other medical bills.

 

Overwhelmed by gifts

Since a story about Silas appeared in The Herald-Times two weeks ago, the Krebbses have received not only money, but hundreds of calls and cards of encouragement.

Lowe's home improvement store gave Silas a $1,500 play gym, and many churches have told the Krebbses they are praying for Silas to be cured.

"It's been amazing," Brandy said. "We feel so blessed. People have been so kind to us that it makes me cry."

 

Still hopeful

Silas is home, taking several medications and homeopathic medicines to prevent seizures and slow the progression of the disease.

"They took his feeding tube out and he's gained three pounds," Brandy said. "He's now up to 22 pounds."

She said Silas loves Heavenly Ham, mashed potatoes and chocolate milk - plus an occasional order of Chicken McNuggets.

"I want to beef him up," she said. "The doctors said it will help him if he gains some weight."

In the meantime, Brandy said, she is trying to cherish every moment she has with Silas.

"Whether Jesus takes Silas or not, we are concentrating on enjoying every day we have with him," she said. "But we've been amazed at how many people have sent us the same Bible verse from Psalms."

The verse says "I will not die, but I will live and proclaim what the Lord has done."