What Your Family’s Past Can Tell You About Your Future
Presentation to the Annandale History Club
November 7, 2011
Dr. Lawrence Schut
                book by Henry Schut, Dr. Lawrence Schut’s father: "Ten Years to Live"  
                                                  Tribute to Dr. John W. Schut

Lawrence and Loretta (Klemz) Schut grew up near Silver Creek and graduated from Annandale High School.  Dr. Lawrence Schut is a 1962 graduate of the University of Minnesota Medical School.   

At age ten Lawrence Schut became aware of the hereditary disease that afflicted his family.  His dad’s cousin, Alice Schut, daughter of Lawrence’s great-aunt Artie (Mol) Schut, displayed a staggering walk,  garbled speech, and choked on food.   Lawrence’s father, Henry Schut, explained to him that Alice had a sickness and wasn’t going to get better.  Alice Schut died at age 37 of pneumonia caused by hereditary ataxia.  Three Mol sisters married three Schut brothers.  All lost their husbands early to ataxia.  Artie (Mol) Schut lost her husband, Will Schut, and four of five children to the disease. 

In 1915 two of Lawrence’s great-uncles, Will and Henry, went to the Mayo Clinic to seek a diagnosis for the disease that afflicted the Schut family.  The diagnosis was familial ataxia.  Doctors told them to “live well and eat right,” which was all that could be done.  Both died in 1918. 

Lawrence’s uncle, John W. Schut (1920-1972), decided to go to medical school in order to study ataxia.  He became a neurologist.  His father, John Schut, Sr., died from ataxia in 1924, his sister Elsie died in 1953 at age 38, brother Bill died in 1961 at age 37, and John himself would be afflicted with the disease.  Dr.John Schut and his brother, Henry (Lawrence Schut’s father), talked for hours about the disease.  Lawrence loved science and decided to become a scientist to help his uncle do scientific research on ataxia.  Lawrence later decided to become a physician.

There is a 50-50 chance that offspring of a family member with the ataxia gene will get the disease.  Henry Schut didn’t have the ataxia gene; therefore Dr. Lawrence Schut and his descendants are free from the disease.  Henry’s brother, Bert, was also spared from the ataxia gene.

In 1950 Dr. John Schut put together a family pedigree or genealogy chart that identified past and present family members who were victims of ataxia.  There are over 2,000 people in the entire kindred with branches of the family in Iowa, Michigan, and the Netherlands.  In 1970, 59 people were at risk for the disease.  Half got the disease and died by ages 21-48.  Today through family planning, birth control and good fortune, only two people are in line for ataxia.  If they don’t have the disease (50-50 chance), it will be wiped out in the Schut family.

Dr. John Schut elected not to have children and encouraged family members at risk for the disease to not have natural-born children.  As stated in the Epilogue to Ten Years to Live, “This is not the most desirable solution, but right now it is the only alternative to giving children a probable sentence of only “Ten Years to Live.”  It is because there were two doctors in the family studying ataxia and advising family members that the disease in the Schut family will soon be wiped out.

Schut History

Schut ancesters are 100% Dutch and lived in Oldebroek, Netherlands.  It is thought that an ancestor, John Vandenberg, died from ataxia (diagnosed as TB of the bone marrow) in 1839 in the Netherlands.  The Schut involvement began when Allie Vandenberg, daughter of Gerrit Vandenberg, married Hendrick Schut in 1865.  They came to the USA in 1866.  They were the parents of nine children and seven got ataxia.  In the 1800s people lived on farms.  There was no birth control and families were large.  Until 1915, there was no means of testing for ataxia. 

Ataxia

Ataxia means without order.  It is spinal cerebellar degeneration that affects body coordination.  The degeneration progresses until the body is unresponsive to signals from the brain.  It is not contagious and is not mental illness.  It doesn’t affect the thinking process or emotions.  Characteristics are a staggering walk, garbled speech, and incoordination of hands.  Victims of ataxia may appear to be drunk.  In one type, it is usually ten years from the first signs of the disease until death, most likely from pneumonia.

According to Henry Schut in his book, Ten Years to Live, the existence of the disease was discovered in 1865 by N. Friedreich, a German scientist, and further identified as “hereditary cerebellar ataxia” in 1893 by Frenchman Pierre Marie.  Dominant hereditary ataxia, known as Marie’s ataxia, is the type that affects the Schut family.  Only those who had the disease could pass it on to their children.   If a person does not develop ataxia, his or her children in turn cannot become afflicted.  The symptoms usually appear around ages 20-40.   Over 32 different types of ataxia have been found.  Not all ataxia types are hereditary.   

National Ataxia Foundation

Dr. John Schut, his brother Henry Schut, and others founded the National Ataxia Foundation in 1957 to give victims and potential victims means of examination and consultation without being charged.  A family history and genetic counseling aid in understanding the genetic risks.  The chain can be broken by not reproducing. 

Considerations for marriage are how the disease will affect the spouse, care of the victim, financial burden, emotional toll, and the possibility of future total disability and early death.

Hereditary ataxia is found in every race and ethnic group. Ataxia is found in Siberia, China, Japan and all over the world.  The outreach of the Ataxia Foundation is international and research grants are requested from all over the world.  There have been research advances.  Dr. Schut said, “A researcher at the University of Minnesota in the next 12 to18 months will use drugs to try to treat mice.  If successful, the treatment will be tried on humans.”   The most rapidly developing research is in the genetics of ataxia.  There is now a test for the ataxia gene.  A researcher at the University of Minnesota found the gene that caused ataxia in the Schut family, but the precise gene location for many ataxias has yet to be discovered.  Ataxia research may also result in information for treatment of other inherited diseases, such as Huntington’s disease.  An estimated 50,000 people in the U.S. are affected by ataxia. 

The National Ataxia Foundation has a newsletter titled “Generations.”  Each year over 600 people with ataxia and their families gather at the annual meeting of the National Ataxia Foundation.

National Ataxia Foundation:  2600 Fernbrook Lane, Suite 119, Minneapolis, MN  (763-553-0020).  The website is www.ataxia.org

Notes by Annandale History Club Secretary

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BOOK

In 1978 Dr. Lawrence Schut’s father, Henry Schut , published Ten Years to Live about the Schut family’s struggle with a killer disease, Ataxia.  Sales of the book benefit the National Ataxia Foundation.  Henry Schut is also the author of Footprints from the Past, published in 1993. 

The following quotes are from the back cover of “Ten Years to Live.”

Ten Years to Live

The ten Schut cousins of Silver Creek, Minnesota, were a bright fun-loving, and reputable bunch of kids.  Yet, in hushed whispers, parents of the community warned their children not to date them.  About half of the Schut children, they said, would soon begin showing symptoms of the strange disease that had invaded the family line, and within ten years they would be dead.  They underestimated.  Of those ten children, only three survived.

For five generations the Schut family has lived—and died—with a rare disease called ataxia, caused by a defective gene.  One of the great-grandparents, Gerrit Jan Vandenberg, had ataxia, and three of his daughters brought it over from the Netherlands.  They all died from it—but not before they had passed it down to a number of family lines, including the Schuts.

One of the survivors, Henry J. Schut, tells this haunting story of what it was like to grow up under the dark cloud of “the family secret.”  He tells how as children they walked rails and fences checking themselves for the loss of balance, which was one of the first signs of the disease.  Then, one by one, they began to display the symptoms and started their staggering journey to the grave: his father, two brothers, a sister, four play-mate cousins, six of his eight uncles and aunts, and dozens of other relatives.  It’s a tragic story, yet a brave, heartening, and sometimes light-hearted one.

Meanwhile, ataxia marches on.  No cure has yet been found, despite the lifetime efforts of the author’s brother, John, a physician, who himself succumbed to the disease after an unprecedented 23-year fight.  The author’s son, Lawrence, also a physician, is carrying on the research and has received the full support of the entire family in the continuing fight against hereditary ataxia.

About the Author

Henry J. Schut was a member of the executive committee and former president of the National Ataxia Foundation.  While a math instructor with Maple Lake High School in Minnesota, Mr. Schut was president of his local educational association and of area farm organizations.  He also had a leadership role in his local church, The Reformed Church in America.  Mr. Schut was named “Teacher of the Year” by his school faculty in 1970, and was given the Good Neighbor Award by radio and television station WCCO in Minneapolis.  He was actively involved in efforts to conquer ataxia until his death at the age of 70 in 1981.

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TRIBUTE

DR. JOHN W. SCHUT  1920-1972

HE FOUGHT TO FIND A CURE FOR ATAXIA, THE DISEASE THAT TOOK HIS LIFE AND LIVES OF HIS LOVED ONES.  HIS EFFORTS IN RESEARCH AND STUDY WILL REMAIN AS A MONUMENT TO THAT FIGHT.

At the last reunion of the 1938 graduating class of Annandale High School it was decided to have a plaque made in honor of Dr. John W. Schut, a member of that class now deceased.  Dr. John Schut was originally of Silver Creek and attended high school in Annandale.  He spent a major part of his life trying to find a cure for the disease, ataxia, which eventually claimed his life.  He was instrumental in starting the National Ataxia Foundation which is carrying on the research he started.

The plaque is now hanging in the new library in the Annandale School and the inscription reads as follows:  He fought to find a cure for ataxia, the disease that took his life and the lives of his loved ones.  His efforts in research and study will remain as a monument to that fight.

Dedicated to his memory by the Class of 1938.

The above picture is the presentation of the plaque by Kermit Lundeen to Schut’s brother, Henry Schut of Silver Creek.  -  Annandale Advocate, 1973

Note:  The plaque is no longer in the school.  It is in the possession of Dr. Lawrence Schut. 

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