Hello and thank you for visiting my XLH fundraising page! XLH (x linked hypophosphatemia) is a rare, chronic and progressive disorder that affects 1 in 20,000 people.
Both of my children (along with myself) have XLH. Brooke and Benjamin are active and enjoy activities that other children their age enjoy. But they have to deal with taking medication throughout the day, getting frequent blood draws, being seen by several specialists along with physical symptoms such as bone pain, muscle weakness, and spontaneous tooth abscesses.
There is currently no cure and no treatment; rather treatment focuses on managing complications of the illness as opposed to the underlying cause of the illness.
The XLH Network, Inc. is a patient led organization that serves as a worldwide support network for those living with XLH, their family members, and the clinical professionals working in the field. It is the only organization focused solely on combatting XLH and its services.
My goal is to raise as much as I can to help The Network accomplish its mission. I hope you will join my efforts by making a donation and helping to spread the word!