Center for Special Children

Jim DeLine, MD at the Kickapoo Valley Reserve from Vernon Memorial Healthcare on Vimeo.

The Center for Special Children is a service offered by La Farge Medical Clinic - VMH with a focus on the diagnosis and treatment of children born with genetic and metabolic diseases, an elite service offered by only six other clinics in the United States.

 

While the genetic research benefits the entire population, most of the afflicted children come from regional Amish and Mennonite communities. The most common diseases are Maple Syrup Urine Disease, Proprionic Acidemia and Phenylketonuria, but more than 30 known conditions exist to some extent in this area. The genetic advancements in both diagnosis and treatment plans made by Dr. Jim DeLine are constantly evolving. The work they are doing with Sitosterolemia is the most current of any clinic offering this specialized service. Scientific study has made the La Farge Medical Clinic's Center for Special Children program an outstanding medical resource, but the significant personal relationships developed between the doctors and the Plain community cannot be underestimated when looking at what has been accomplished since the program opened in 2015.

The La Farge Medical Clinic - VMH has developed the Center for Special Children as a genetic testing program that is aimed at improving the lives of local children and families. This program offers low-cost genetic testing and care for patients with rare genetic and metabolic disorders.

The program's goal is to continue to help those families affected by complex medical needs with affordable health care, while also building an expansive catalog of diseases that will improve diagnosis and treatment in the future.

(Pictured above) Organic Valley provided $50,000 a year for three years to support the launch of the Center for Special Children program. 

Funding

Funding for the services offered by the Center for Special Children program comes partly from patient charges, but much of it comes from the community.  Proceeds from a Vernon Memorial Healthcare Foundation benefit auction, a community-sponsored benefit auction, private donations, and grants are crucial in helping the Center for Special Children offer affordable health care to those families that qualify.

If you would like to help the Center for Special Children fulfill its mission, please contact Greg Lawton, Practice Manager for La Farge Medical Clinic-VMH, at (608) 625-2494 or a donation may be made directly to the Vernon Memorial Healthcare Foundation, Inc. designated to this important service.

Media Coverage

April 22, 2015 - La Crosse Tribune/Vernon Broadcaster - La Farge Clinic Tailored to Revolutionize Treatments for Amish

April 22, 2015 - WXOW News 19 - Genetic Testing Program Helps Amish in Vernon County

April 15, 2015 - La Crosse Tribune - Organic Valley Donates to La Farge Clinic's Genetic Program

April 1, 2015 - La Crosse Tribune - La Farge Medical Clinic to Offer Genetic Program for Patients

 

Newborn Screening and Genetic Testing

At the Center for Special Children, we care for children with genetic disorders. Some of these inherited genetics conditions are identified on the newborn screen, which tests baby’s blood, heart and hearing on the first day of life. Some conditions are identified through testing of specific genes, if a certain condition is suspected.

WI State Lab of Hygeine http://www.slh.wisc.edu/clinical/newborn/

Univ Wisconsin Cytogeneticshttp://www.slh.wisc.edu/clinical/cytogenetics/

Das Deutsch Clinic Lab http://ddcclinic.org/laboratory/index.html    

 

Educational Events

In effort to learn more about the conditions within our community, we are co-hosting a conference for medical and educational providers that work with the Amish and Mennonite community in Wisconsin.

Practical Approaches to Inherited Disease in the Plain Communities in Wisconsin. Event Website Downloads

 

The conference was supported by the following organizations:

Univ Wisconsin Pediatrics https://www.pediatrics.wisc.edu/

Univ Wisconsin Waisman Center http://www.waisman.wisc.edu/

Windows of Hope Project – Univ of Exeter http://wohproject.org/

Wisconsin Partnership Program http://www.med.wisc.edu/wisconsin-partnership-program/main/499

WI Guild of Midwives https://wisconsinguildofmidwives.org/

 

The Center for Special Children provides a service that is offered by only six clinics in the country which care for special children, primarily in the Amish and Mennonite communities. The clinics utilize genetic testing to identify and treat rare conditions. All clinics receive guidance from the communities that they serve.

Clinic for Special Children https://clinicforspecialchildren.org/

Das Deutsch Clinic http://ddcclinic.org

New Leaf Clinic http://newleafclinic.org/about-us/

Community Health Clinic http://www.indianachc.org/wp/about/

Central Pennsylvania Clinic

For additional information about genetics and the inheritance of disorders, review the following websites:

Gene Reviews http://www.ncbi.nlm.nih.gov/books/NBK1116/

Online Mendelian Inheritance in Man http://omim.org/

National Organization of Rare Diseases https://rarediseases.org/

Windows of Hope Database of Disorders http://wohproject.org/disorders/

Amish, Mennonite and Hutterite Genetic Disorder Database http://www.biochemgenetics.ca/plainpeople/

 

General Information on the Amish

The Young Center for Anabaptist and Pietist Studies at Elizabethtown College https://groups.etown.edu/amishstudies/