Meet one of our Network Board Members, Kim M. from Louisiana! She is 36 years old and has a precious three-year-old daughter. Kim was diagnosed with XLH when she was two years old, after her mother kept advocating for her and fought for a correct diagnosis.  In 2015 she had a genetic test to confirm that she had XLH, and subsequently she was able to get an early diagnosis for her daughter by having her genetically tested as well.

Kim shared that XLH has a definite impact on her daily life. She struggles on a daily basis with stiffness and pain. Kim tries to remain as active as possible by walking and swimming.

Kim first found the Network in 2011, but didn’t get involved until 2016 when she received word that her daughter’s genetic test was positive for XLH. It was this diagnosis that pushed her to get involved as she knew that she would need to be her daughter’s voice and advocate. When asked what the Network has meant to her, she had this to say: “Since my first XLH Day in 2016, I knew I found my forever extended family. Being a part of this incredible organization and being able to help and talk with others has added extra special meaning in my life; I am an XLH fighter, an XLH mother, and an XLH friend. And I wouldn’t have it any other way.”