The XLH Network, Inc.

23 hours ago

My name is Christina, I am a mom of 10 children, 7 are adopted, including a set of siblings with XLH. Like most people, I had never heard of XLH before my kids diagnosis.

When both kids, now 4 and 3, came to us from the hospital nursery they were diagnosed as Failure to Thrive. They didn't grow as fast as their peers, and presented with a few physical differences. One of those being Craniosynostosis. Our then 19 month old underwent a major surgery, Cranial Vault Reconstruction, where he suffered a complication. This prompted us to ask for a genetic consultation and testing panel. We finally had answers: XLH!

I then spent my time educating myself and researching everything I could find about XLH, the specialists needed, the care, treatments, all while awaiting his sister's genetic test results, she also had an XLH diagnosis. We were lucky to have a great medical team, and they were quickly started on treatment. Though we were traveling several hours to get to our care team in New York, that prompted our move to Virginia, where my husband and I grew up, and we knew the children's hospital was amazing, and close by. The kids new team of doctors is amazing and have continued our treatment with little to no interruption. A big thank you to the team at CHKD!

Through this journey we found the XLH Network and our new family. A place with people who, though struggling with the same condition, are the most welcoming group I could ever ask to be welcomed into. Though my children have a long road ahead, they are not on this journey alone, they have the support of those who came before them, creating this amazing Network and platform for change, and acceptance!

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The XLH Network, Inc.

2 days ago

My name is Xyola and I was born and raised in Fergus Falls, MN. I'm a third generation XLHer but, at the time, my family was unaware of anyone else with the disorder. We were isolated in rural Minnesota and around the time I was around 16 years old, I found the XLH Network.

During this time, I was having a really hard time in school and dealing with noncompliance to my 504 plan. As I was struggling with my own accommodations, I quickly realized that this was a greater problem throughout my community. Knowing I wasn't alone actually gave me the strength to finish high school.

Still hearing others' stories gave me the courage to reach out to the local news and publish a story about the public school system's shortcomings in accommodations, all in hopes that it would bring awareness to the issue. Since then I have attended a couple of XLH days and met the most incredible people.

I have lost some family members along the way and so many people from the XLH Network gave me support through some very tough times. I recently graduated from MState Technical College with my Associate's in Psychology. I plan on continuing my education with a major in Public Health. I'm trying to find my voice and courage to advocate again. My hope is to work with the rare disease communities by obtaining grants and by working on legislative reform to ensure the overall well being of people.

#XLH #XLHAwareness #XLHAmbassador #Advocacy #RareDisease #StrongerTogether ... See MoreSee Less