PARENT SUPPORT GROUP
The main source where I have found information about the syndrome and have found support is through the Wiedemann-Steiner Syndrome (WSS) Parent Support Group on Facebook. This is a private group for parents and guardians only (there is a separate page for the foundation and one for extended family members and friends). This resource has been an incredible one for information, venting, ideas, help, and support from families all across the globe. I have learned about specific testing that would be beneficial to check for issues related to the syndrome. I have been able to give and seek comfort from other parents and give insight to my experiences to help and support others. There is a conference as well where families can get together, learn from experts, and our children can get to know others who are like them.
CONCLUSION
No one starts out planning a family thinking they will have a child with special needs, but our son is so unique and brings so much joy to everyone with whom he comes into contact. We will always do our best to advocate and fight for him. He works so hard to meet all his milestones and never gives up, and we are so proud to be his parents.
We do not know what challenges Levi may face as he grows older and starts school, but all we can do is take it one day at a time, love him for who he is, and do everything we possibly can to make sure he has every opportunity to live his best life! •
FURTHER REVIEW : WSS RESOURCES
- Wiedemann-Steiner Syndrome (WSS) Foundation wssfoundation.org/wiedemann-steiner-syndrome
- National Organization for Rare Disorders (NORD) rarediseases.org/gard-rare-disease/wiedemann-steiner-syndrome
- Understanding Sensory Processing Issues understood.org/articles/en/understanding-sensory-processing-issues
- Wiedemann-Steiner Foundation Facebook Page facebook.com/wssfoundation
- Wiedemann-Steiner Youtube youtube.com/channel/UCwlYcTsEsMs3skZfOjsJGRA
- Wiedemann-Steiner Parent Support Facebook facebook.com/groups/667174239987278
- Wiedemann-Steiner Family and Friends facebook.com/groups/339084866256825 Early
- Childhood Intervention hhs.texas.gov/services/disability/early-childhood-intervention-services
ABOUT THE AUTHOR:
Kelly Medellin resides in Texas. She is a wife and mother of three incredible boys, the youngest of whom has a rare genetic disorder called Wiedemann-Steiner Syndrome. She has a Ph.D. in Curriculum and Instruction with an emphasis in Early Childhood Studies from the University of North Texas. Currently, Dr. Medellin is the program coordinator for the Early Childhood-3rd Grade Teacher Certification Program and the Early Childhood Studies and Care Program at her university.
