My name is Mallory Schindler and I am the proud Mama of a son with HADDS. My son, Grant, was born in 2015 and was diagnosed with HADDS in Spring of 2017, just a few months after the official research was published. After the diagnosis was confirmed, we were relieved and immediately started searching for others who would could relate and understand our lives and struggles to date. There were only about 25 people worldwide that had been officially diagnosed with HADDS when we "joined the club" so the group became close very quickly, sharing stories, treatment plans and symptoms. As the social media group grew in size and HADDS started growing globally more rapidly, a few of us felt lead to do more.

Being in Texas gave us the gift of easy trips to Houston to meet with the experts, being Military has given us access to specialists beyond our wildest dreams; never wanting or needing additional support. Since Grant has been diagnosed, we have had therapy as a part of our every day lives. On a regular basis we get ABA, Speech, PT and occasional OT. While our schedule is packed, the structure has helped Grant tremendously. When it came time to expand past the initial Facebook group, we felt lead to champion research opportunities, support other families and promote access to educational materials and therapies. While every HADDS person is unique in how they display the syndrome, one thing is essential for each---access to information and support!

Dave, Grant (Age 1.5) and Me (2016)

Grant (2019, Age 4)