My name is Leanne and my son Justin (above) will be 26 years old this month. 26 years ago there was no support for WHS. My first contact was Becky Richardson. Then we found out about the first conference in Iowa. We got to meet other children like Justin and started to have hope. And then it was great to be at the 20th National Conference. We had been to others also and the regional ones too; until then I was grieving and in denial.
The group has helped me so much now and we love the gatherings and the national conferences. Now that research has come so far and Justin is doing so much better than when he was younger. We are able to help the new moms on this wonderful WHS journey. He is my little man and just like men he loves women, sports, and his music. He is still small, 4ft and 63 lbs. He is totally tube fed, can walk and say mama. He understands everything. Our biggest problem with him now is his seizures. He was seizure free for 5 years and then when he hit puberty they started back.
It was great winning the WHS shirt and then I bought us all one. When we wear them we always get people to ask what they are about, even doctors. We also wear our WHS bands and I can’t tell you how many we have given away; not only to people we meet but also doctors. We love it to get the word out about our children. Justin has taught us and the doctors so much. We are blessed to have him in our family.
Beyond the Textbooks for Wolf-Hirschhorn Syndrome: Lessons for Prenatal and Pediatric Genetic Counselors
Co-hosted by NSGC’s Prenatal Counseling & Ultrasound Anomalies and Pediatric & Clinical Genetics Special Interest Groups (December 11, 2012)
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