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Iowa Farm and Ranch
April 2011
Trottin’ for Taylor Mohr to ride horse across Iowa to raise money and awareness for Batten Disease by Emma Struve One Ute family’s struggle with a rare genetic disorder has led matriarch Tammy Mohr to embark on an across-Iowa trail ride this summer. The primary purpose of the equine trail ride, called “Trottin’ for Taylor”, from the Missouri River to the Mississippi River is to raise awareness about Batten Disease and money, which will be donated to the University of Iowa for ongoing research into the illness. Dr. Beverly L. Davidson, Ph.D., with the University of Iowa, who conducts research on Infantile and Late-Infantile Batten Disease along with other genetically inherited neurologically degenerative diseases, will join Mohr riding during the last leg of the journey. Davidson explained that Batten Disease is a recessive genetic disease, which means both parents have to be a carrier of the same genetic mutation that then has to be passed along to their child for the child to be affected by the disease. Carriers do not express any symptoms. Batten Disease comes in a spectrum of types and may be caused by a mutation in any one of seven genes; taken together, Batten Disease is the most common neurodegenerative disease in children, Davidson stated. Mohr’s seven-year-old grandson Taylor was diagnosed with Late-Infantile Batten Disease when he was just four years old, though symptoms started to become apparent 18 months earlier. As she describes it, the disease robbed the vital, active boy who, even as a toddler, loved to ride horses and four wheelers, of his sight, the ability to talk, and eventually the ability to move independently. In a letter explaining her cause – “Trottin’ for Taylor” Mohr explained, “Today, at seven, Taylor is bedridden, blind, on a feeding tube, can’t walk or talk, and his limbs are contracted… The one thing this disease has not robbed him of is his hearing. He loves to listen to music and movies.” Davidson illustrated that Batten Disease is caused by a protein deficiency in certain cells of the brain. The absent protein would be responsible for “garbage disposal in the cell.” Since it is not there, a back up of toxic “garbage” occurs in the
cells that causes the cells to die. This cell death causes the loss of vision, seizures and psychological development problems. “Generally, children do pretty well the first few years but as they become older, they become more debilitated,” Davidson stated. In Late-Infantile Batten Disease the life expectancy is just 10 to 15 years. Taylor, she said, has type 2 in which case symptoms first appear between 18 and 24 months of age. Children with Late-Infantile Batten Disease are born appearing normal. One of the first symptoms of the disease is that children exhibit a loss of developmental milestones. The progression is to then show additional developmental delays. While Mohr has been planning her journey to raise awareness and funds for research about the Batten Disease since December of 2010, she learned there are members of her community that were unaware of Taylor’s ongoing battle with his failing young body. According to the Batten Disease Support and Research Association (BDSRA) website, only two to four kids out of 100,000 are affected by the disease. The Batten Disease Support and Research Association is a support and educational organization first composed of the families of kids affected by Batten Disease. The BDSRA will be providing updates throughout Mohr’s trip at www.bdsra.org. Mohr wrote in an e-mail to the Denison Bulletin, it is her hope that through the trail ride “the love I have for the Lord, Taylor, my family and my passion for horses will be a witness to folks along the way. I am excited to meet new folks and share stories; everyone has a story.” The trip from the Missouri River to the Mississippi will start at Plattsmouth, Nebraska on Wednesday, June 1. Mohr plans to travel with three horses and a support crew driving a truck and horse trailer. Foe, the German shepherd mix that generally accompanies her on trail rides, will also be along for the expedition. Mohr’s mare, Cola, is one she raised from a colt; she is also the daughter of the first horse Mohr owned. Each day the group will travel between 20 and 25 miles, which Mohr estimates will take about
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Tammy Mohr has planned overnight stays on her trip at: 1. Emerson; 2 a horse park along Highway 34 just past Highway 71; 3 Corning; 4. Afton; 5. Osceola; 6. Stehans State Forest; 7. Melrose; 8. Promise City or Plano; 9. Centerville; 10. Bloomfield; 11. Cantril; and 12. Shimek State Forest. She will end her ride at the Mississippi River, following Highway 2 from Shimek State Forest. Graphic by Gordon Wolf
Ute resident Tammy Mohr, her mare Cola and dog Foe (not pictured) are getting ready to embark on “Trottin’ for Taylor,” a ride from the Missouri River to the Mississippi River along a route in southern Iowa, to raise awareness and money to combat Batten Disease. Mohr’s seven-year-old grandson Taylor was diagnosed with LateInfantile Batten Disease when he was just four years old. Photo by Bruce A. Binning six hours. Overnight stops are planned for campgrounds, parks and in some cases, even fairgrounds, along the way. Mohr said the communities she has contacted in advance have been extremely welcoming and hospitable. Many have even provided accommodations for the horses. She invited those along the route to ride for any amount of time they can. “I know I can’t help Taylor,” Mohr said in an interview, “but maybe this, in some way, can help, if not him, than other kids.” Money raised during the “Trottin’ for Taylor” trail ride will be donated to Davidson’s research project. Davidson called Batten Disease a “uniformly fatal disorder.” She explained that her interest in the disease was spurred by an invitation from the BDSRA in the late 1990s to consider researching the disorder. Research Davidson is presently undertaking seeks to enable a few cells capable of manufacturing the missing protein at a “regionally ideal site” within the brain of Batten Disease affected individuals. The correctly working cells would imbue the cerebral-spinal fluid with the needed protein, or enzyme, thereby “bathing the brain” in it. Davidson remarked, “We know if we get the enzyme to the outside of the (incorrectly functioning) cell, it possesses the machinery to get inside.” She and her research team have tested the theory on mice and are now working with other larger animals that exhibit the same genetic mutation seen in children with Batten Disease. Until such a time as Davidson or other researchers develop a process to treat Batten Disease children affected by it only receive palliative care. She did note that genetic testing is available for parents to determine if they are potential carriers of the recessive genetic mutation responsible for causing Batten Disease. In the future it is hoped that Batten Disease will be among genetic diseases screened for in infants because if a treatment is developed early diagnosis will be key to successful application of the treatment. Mohr will be accepting donations on behalf of the University of Iowa at 42883 – 270th Street, Ute, IA 51060. Alternatively, donations may be sent directly to the University of Iowa at P.O. Box 4550, Iowa City, IA 52244. Donations should be made payable to University of Iowa Batten Research (in honor of Taylor Mohr). For more information about the “Trottin’ for Taylor” ride contact Mohr at 712-269-1461.