This morning on my way into Chariton, I passed an interesting sight and stopped to talk to the riders and take some pictures. There was a chuck wagon and two horseback riders in the group. On the chuck wagon cover was printed "Trottin for Taylor", "Raising Awareness for Batten Disease."
|Click on picture to enlarge|
Tammy Mohr and her husband have a grandson, now seven, who has a rare neurological degenerative disease know as Batten Disease. The disease comes in one of four forms and in every case is fatal. Taylor has the Late Infantile form for which there is no cure. With this disease, the arteries are hooked up backwards and the blood flows from his heart to his lungs and back to his heart, without traveling to the rest of his body, thus he does not receive the oxygen his body needs to survive. He underwent surgery in Children's Hospital at 10 days of age and overcame that obstacle with complete recovery.
He seemed to have overcome the disease until he was 2½ years old, when he started to have childhood development issues. Now at 7, Taylor is bedridden, blind, on a feeding tube, cannot walk or talk and his limbs are contracted. He does seem to remember the happy times he enjoyed until he was two. When talking about those times, a smile will appear on his face.
Tammy and her crew left her home in Ute, IA June 1 on horseback, accompanied only by a chuck wagon and anyone who wanted to ride along with them. The trip is planned to take two weeks. They are spending this evening at the Russell Sale Barn and tomorrow will continue to Rathbun Lake Landing. From there they travel on Hwy 2 into Centerville. Farmington is the destination after that. If you would like to ride along or just visit with them maybe you could find them along this route.
The following information was taken from the brochure Tammy gave me as we stood and talked along Hwy 34 on the outskirts of Chariton. Their goal is to ride across Iowa from the Missouri River eastward to the Mississippi River to raise awareness plus funding for further research for Batten Disease. Batten Disease is so rare that there are less than 1,000 children affected worldwide. Dr. Beverly Davidson at the University of Iowa, who is one of the leading scientists in America, is researching Infantile and Late Infantile forms of this disease. All monies raised will go to the University to aid in their research. There are other places throughout the US that conduct research, but they focus more on the juvenile form of the disease. Funds are very limited, so without money to expand research, there is little advanced treatment for children like Taylor who are slowly dying a little every day.
I know this is hard to read, but we forget how lucky we are until we meet someone who is not so lucky. They are lucky to have this wonderful child in their life, but know without help and answers to their prayers, they will not have him too much longer. Any donations received will be given to the University of Iowa. Please feel free to call them at 1-800-648-6973 or Tammy at 712-885-2535 for further information about the ride, route or any other questions you may have. For additional information about the disease itself you may visit http://www.bdsa.org/. Tammy Mohr's address is 42883 270th St. Ute, Iowa 51060. Any help would be greatly appreciated.