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| From left, Jeff, Max, Sam and Jane Trimper sit together in their Stanton home. |
| | Redneck Prom | Activities: Auction, silent auction, redneck games, crowning of prom king and queen, and a pig dinner.
Time and date: From 6 p.m. to midnight Nov. 10.
Location: Holland Lake Golf Course in Sheridan.
Tickets: Priced at $30 each, limited quantity, must be 21 or older.
Contact: Call (989) 831-5187 or e-mail jtrimper@cms.maisd.com to purchase tickets or for more information.
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10/8/2007 10:00:00 AM
'Redneck Prom' will benefit Maddie's House in Stanton
Luke Stier
Staff Writer
"It's more about life than death."
Those are the words of Stanton's Jane Trimper. It's been five years now that metachromatic leukodystrophy (MLD) has provided a very tough battle for the Trimper family, which has been missing a member for nearly two years. On Nov. 7, 2005, 7-year-old Maddie lost her battle with side-effects from MLD.
Two years later, Jane and her husband, Jeff, continue their effort to raise MLD awareness and care for their remaining two children, Max, 12, and Sam, 8, both carriers of the disease.
Nov. 10 fundraiser
To bring MLD to the forefront of people's minds, a "Redneck Prom" has been scheduled for Nov. 10 at the Holland Lake Golf Course in Sheridan.
All proceeds will benefit Maddie's House, a state-of-the-art playground to be erected in Stanton. As noted previously, Jane says the venture is more about life than death.
"We don't want a Maddie memorial," said Jeff.
The playground will be more about celebrating life and raising awareness about a disease very few people know anything about.
One person who does know about MLD is Jeff Foxworthy, popular comedian and host of Fox Television's "Are You Smarter than a Fifth-Grader?" Foxworthy made a personalized DVD that will be shown at the Redneck Prom and donated a special item to be auctioned off.
Jeff Foxworthy
The 49-year-old Foxworthy tells a few jokes on the DVD.
One of those includes: "You know you are at a redneck prom if you had to stop at a cemetery on the way here to pick up some flowers for your date."
Foxworthy then thanks everyone for their continued support of the Trimper family and signs two "redneck roller skates" - cowboy boots with wheels attached - to be auctioned off during the prom.
Foxworthy has done more than just make a special recording from the set of his television game show, however. He actually met with the Trimper family while they were at Duke University in Durham, N.C., during the stem-cell transplants that Maddie and Sam received in 2004.
Jane said Foxworthy and fellow comedian Larry The Cable Guy often frequent the Duke halls visiting patients.
"He is truly a great guy," she said of Foxworthy.
Five years now
The Trimpers first learned of their family's plight on Oct. 25, 2002, after Max fell on the playground, prompting a computerized tomography (CT) scan.
It was then that doctors found myelin damage in his brain. A pediatric neurologist ordered a magnetic resonance imaging (MRI) and completed blood and urine tests, which turned up the diagnosis of MLD.
Following Max being diagnosed, Jeff and Jane had Maddie and Sam tested. Each had a one-in-four chance of having the disease. Both tested positive.
The Trimpers discovered that they are both carriers for the disease. The odds of any one person being a carrier are one in 150.
All three children
MLD typically follows a pattern.
Since Max began showing symptoms at 7 it was possible that Sam and Maddie would do the same.
While still dealing with Max's recovery, the Trimpers instantly had to turn their focus to Maddie and Sam.
On July 27, 2003, they learned that Maddie was showing "definite disease" after undergoing tests at Duke. Through intense investigation of their treatment options, the Trimpers learned it was possible to stop the disease before it got started.
They found a researcher at Duke who had successfully performed stem cell transplants and halted MLD before symptoms appeared.
On Aug. 24, 2003, the family returned to Durham where Maddie and Sam began workups and preparations for stem cell transplants. What was meant to be less than a three-week trip eventually stretched to more than four months in North Carolina. The Trimpers didn't arrive back home until Feb. 1, 2004.
Maddie's battle
During the summer of 2004, Maddie wasn't feeling well.
On July 10, 2004, the family headed back to Duke for routine checkups. There doctors diagnosed Maddie with gall stones and she underwent surgery to remove her gall bladder on July 20, 2004. It was the beginning of a long ordeal for Maddie and her family.
On Aug. 6, 2004, she was diagnosed with Epstein Barr disease and mononucleosis, a side-effect from the stem-cell transplant she had undergone.
A two-month stay in North Carolina allowed Maddie's body time to heal. She and her mother then returned to Stanton.
Due to Maddie's weakened immune system, on Nov. 15, 2004, the Trimpers returned to Duke where she was diagnosed with pneumonia and was admitted to the hospital.
While Maddie suffered several complications after the transplant, doctors believed she would fully recover. But in October 2005 Maddie was transported from Helen DeVos Children's Hospital in Grand Rapids to the pediatric intensive care unit at Cornell University in New York City.
She died after spending a month in New York.
Sam responds well
While Maddie struggled with side-effects from her stem-cell transplant, Sam's body responded well to his.
He has experienced no MLD symptoms.
"He's a constant reminder of why we did what we did for the kids, even with Maddie's death," Jane said.
"He's running around like a normal 8-year-old," Jeff said.
That "normal 8-year-old" this year was able to participate in youth soccer in Stanton. When his parents watched Sam running up and down the field, they realized just how far they had come.
"You can't help but be thankful," said Sam's proud soccer dad.
Max's rehabilitation
Max, meanwhile, is now in the sixth grade and utilizes a motorized wheelchair to get around.
He also is working on using a device that will help him communicate better.
"Both (the wheelchair and the augmentative device) are helping us build his independence," the Trimpers said in a letter to friends and family this fall.
"Max had a great year in school," Jane said.
The Trimpers hope that Dr. Joanne Kurtzberg, a Duke professor of pediatrics who was Maddie's specialist during the stem-cell transplant, will find a way to heal Max.
"Her team has been working with oligodendrocyte stem cells," the Trimpers' letter said. "They have been using them in MLD mice and the results have been good.
"She (Kurtzberg) is hoping to start human trials next year," they wrote. "Her research provides us with much hope and excitement. The medical fellowships that our partners supported helped make all this research a reality."
Max also has a big week ahead of him in November. Just three days after the Redneck Prom, the Make-A-Wish Foundation will send him and his family on a five-day trip to Walt Disney World in Orlando, Fla.
A $50,000 playground
Although Maddie is no longer with them, the Trimpers think of her frequently.
"We constantly miss her every day," Jane said.
"It has been tough," Jeff said. "You do what you can do for the boys."
The family hopes to raise $50,000 to pay for the new playground to be placed in Maddie's honor on Main Street between Rustic Floral and the Fred Meijer Heartland Trail.
If the Trimpers are able to reach their goal, the playground will be completely handicapped accessible so that all children will be able to enjoy it.
Community support
Right from Max's diagnosis almost exactly five years ago, the Trimpers have received continual support from the community.
"With our fundraiser we do each year we think it (the support) is going to die off," Jeff said. "But it doesn't. The hours people put in... it means so much."
"It says a lot about our friends," Jane said. "They keep us going and encouraged."
Without the support of friends and family, the Trimpers say they truly don't know how they would have made it this far.
In fact, that's how the new playground idea came about.
"We've always wanted a playground here in Stanton," Jane said. "This got started though by one of the people at a meeting bringing up the idea.
"At first we were like, there's no way we can do a playground," she said. "Then it was, well, maybe we can do a playground. Then we realized we really could do it."
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Posted: Monday, June 09, 2008
Article comment by:
Holly
My 2 y.o. nephew recently died from this trajic disease. I can't even begin to imagine all three children having it.
Please see the following website, www.mldfoundation.org for more information on MLD. They offer a lot of information and loads of support. You are in my thoughts and prayers.
Posted: Saturday, October 13, 2007
Article comment by:
Latonia Estill
The story was very heart touching I cried reading it. My hat goes off to Jeff foxworthy and Larry the cable guy for there support. My thoughts and prayers are with you. You are a very strong family.
Posted: Thursday, October 11, 2007
Article comment by:
letha zimerman
I don't know if this question is in the right place,
Whatever happened with the missing boy from greenville? His name escapes me, I still see missing posters of him around greenville after I have had several people tell me that his body had been found. Is he still "missing"?
Posted: Tuesday, October 09, 2007
Article comment by:
Debra Rettenmeier
From one MLD family to another, please know that you are greatly admired for your fortitude and positive attitude. We have 2 girls and both were diagnosed with Juvenile MLD in 1995. Our oldest is 19 years old and totally disabled. Our younger daughter is 16 and still able to walk, talk and feed herself, but her balance is becoming a big problem. We did not follow the route of
a BMT, but our oldest is now 12 years past diagnosis. Both of our girls attend high school and we have a lot of community support. It is inspiring to hear stories such as yours.
Posted: Tuesday, October 09, 2007
Article comment by:
Penny Barber
Nice job on the Red Neck prom/Trimper article on the front page! I really enjoyed reading it,and all the follow up you have done on the trimpers thru out their journey with MLD. Thanks again.
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