The XLH Network, Inc.

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Hi! My name is Chandler, I have a spontaneous case of XLH, born and raised in north Idaho and currently residing in Dura...
06/10/2026

Hi! My name is Chandler, I have a spontaneous case of XLH, born and raised in north Idaho and currently residing in Durango, Colorado! I’m 23 years old! I look forward to being more involved in the XLH community as an XLH Awareness Ambassador!

I was diagnosed with X-linked hypophosphatemia (XLH) at the age of two, and since then I’ve had ongoing care with endocr...
06/09/2026

I was diagnosed with X-linked hypophosphatemia (XLH) at the age of two, and since then I’ve had ongoing care with endocrinologists and orthopedic specialists. Growing up, I had frequent appointments that included X-rays, blood work.

As a child, I was treated with oral medication before transitioning to Crysvita in 2019. I’ve also had multiple surgeries that required hospital stays, which played a big role in my early life.

Living with XLH continues to affect me day to day. I experience pain, especially in colder weather, and my legs get tired quickly, which limits how much I can walk. Because of my condition and past surgeries, my walking is different, which has been one of the more challenging parts for me.

Even with these challenges, I’m grateful to be able to stay independent and do things for myself. I wanted to be part of this because XLH is not widely known, and I’ve never met anyone else with the same condition. I hope that by sharing my story, others who have XLH can feel less alone and more understood.

My name is Rene’ Collins, I’m 56 years old and I’m an XLH’er. At the age of six, my mom’s best friend took a picture of ...
06/06/2026

My name is Rene’ Collins, I’m 56 years old and I’m an XLH’er. At the age of six, my mom’s best friend took a picture of us at the beach. When the pictures were processed, they noticed that my legs were abnormal, my ankles were apart and I had knocked knees. We were referred to some orthopedic doctors in Galveston, Texas, at UTMB and given a team of doctors.

Periodically, between the ages of six and eight, they decided to monitor my condition. As a result, I was left in the hospital until I could no longer walk. I was 8 years old. In October 1978, I underwent bilateral osteotomies. I was placed in a wheelchair with a cast from my toes to my hips. This experience was isolating and lonely.

Later, I participated in swimming and water polo and suffered an injury that required me to be taken to the emergency room. As a result, they called an orthopedic specialist from Galveston, UTMB. His name was Dr. Cox and he diagnosed me with XLH. Up until this point, we had assumed that my condition was vitamin D-resistant rickets. When Dr. Cox heard my story, he said, “I know exactly what you have.” Then he referred us to a surgeon in Houston to perform an osteotomy.

I later married and had several children. As far as I know, only my son has XLH. I also worked as a surveyor for several years but left the field because it was not an easy job for a woman in construction. I then drove a semi-truck for five years. Later, I became an activity director and a PTA member. And then life took a turn when I lost a daughter. I gained a lot of weight during this time. My husband also had Alzheimer’s and cancer. I came across an ad for an exercise class called Pound and thought it sounded fun. I attended that class, and it ignited a passion within me that I wholeheartedly embraced.

I am extremely grateful that I am no longer experiencing bone fractures, and for the first time in my life, I have normal vitamin D and phosphorus levels. I have been taking Crysvita for 6.5 years now, and while I am still dealing with issues physically, I am optimistic that things will improve.

My name is JoBeth Souza. I live in North Carolina. My youngest child is a spontaneous case of XLH. I became involved ...
06/05/2026

My name is JoBeth Souza. I live in North Carolina. My youngest child is a spontaneous case of XLH. I became involved with the XLH Network seven years ago. I first began volunteering but then applied to be on the XLH Board of Directors. I also have served as the Vice President of the XLH Network and currently, am serving as the President.

My name is Zackesha (Kesha) Harthorne. I am a first-generation spontaneous case, diagnosed with X-linked Hypophosphatemi...
06/04/2026

My name is Zackesha (Kesha) Harthorne. I am a first-generation spontaneous case, diagnosed with X-linked Hypophosphatemia (XLH). As a child, I endured significant physical suffering, including chronic pain, fatigue, and stiffness. Far greater than any physical pain I had to endure, however, was the mental toll. Feeling less than and wondering if I would be accepted by others took its toll. The constant desire to look like and maneuver like my peers was, at times, unbearable, and my confidence, self-esteem, and self-worth were deeply affected, but none of that was in vain. I am now an adult and a mother, with much strength and willpower. My son also has XLH, and as his mother, I hope to pass along those traits, as his case is more severe. It is for him, his future, and the many others in the XLH community that I dedicate myself to this fight.

I am Connie Baxter, the XLH Ambassador for Nebraska. I was born in 1962 and by the time I started to walk, my parents kn...
06/03/2026

I am Connie Baxter, the XLH Ambassador for Nebraska. I was born in 1962 and by the time I started to walk, my parents knew something was wrong. At the time, the doctors diagnosed me with Vitamin D Deficiency Rickets. I wore long leg braces on both legs and had to wear ugly black and white orthopedic shoes when I was young. One of my children inherited XLH and he passed it to both of his daughters. We now know that we all have XLH. We are forever grateful for the XLH Community and are happy to be advocates for this rare disease.

My name is Erica Vaught. I am 44, born in Ohio & raised predominantly in Mason, Ohio. I am married, have 2 amazing sons,...
06/02/2026

My name is Erica Vaught. I am 44, born in Ohio & raised predominantly in Mason, Ohio. I am married, have 2 amazing sons, & am a multi-award-winning cake artist! I own a successful, cottage cakery in Loveland, Ohio! I specialize in buttercream floral work & enjoy creating unique desserts for weddings. I started with custom cakes almost 13 years ago! My work is not just a career but a true passion & I pour every ounce of myself into each piece!

I found out that I had XLH late in life. Working through the medical system was a nightmare. I was immobile in 2022/2023 & barely working until finally someone listened to me. I was diagnosed with CRPS, granted a permanent nerve stimulator & then suggested that I go see a geneticist. I agreed, not thinking anything would come of it. I met with the geneticist in April 2024 & she listened to me talk for 3.5 hours. Based on my story, complaints, symptoms, and visual examination, she ran two tests & one of them was positive. They said I had a mutated gene (PHEX) & mine was mutated twice. Once this was confirmed, I started to get the help I needed. It's been a long journey & my entire life makes total sense now, down to my childhood. I am still able to work part-time for now & I try to stay busy, as it takes my mind off of things.

I try to stay involved in the community! I work with multiple non-profits in my local area! I donate gift cards, bake cakes for their cake auctions, & donate desserts for their yearly events! I try to be as farm-to-table and local as possible! I make my own extracts, raise the chickens for the eggs, and mix my own cake flour. Personally, I am not a fan of pre-made cake flour; I like to sift my own with all-purpose. I try to keep all the fruit locally sourced as well! I like to stay active and positive while navigating my new norm and running a small business.

Some days are harder than others, but it always works out! I am excited to help represent my area and spread awareness!

June 1st, 2026Dear XLH Network Community,We want to let you know about a change we are making to the way we process dona...
06/02/2026

June 1st, 2026

Dear XLH Network Community,

We want to let you know about a change we are making to the way we process donations.
As a small nonprofit, we are always looking for ways to make responsible financial
decisions and ensure that as much of our funding as possible goes directly toward our
mission: education, peer support, advocacy, research, and programs for individuals and
families affected by XLH.
After careful review, The XLH Network, Inc. has decided to move from DonorView to Zeffy
as our donation platform. DonorView has been costing the organization as much as
$7,000 per year. While it has served us in many ways, we do not currently receive enough
individual private donations to justify that level of expense.
The new platform will be much less expensive for the organization. However, one change
you may notice is that donors are given the option to cover a service charge or processing
fee when making a donation. and that charge is higher than our previous donation
platform.
We want to be very clear: covering that service charge is completely optional.
If you are able and choose to cover it, we are grateful. If you prefer not to cover it, your
donation is still deeply appreciated and will be received with the same gratitude. We do
not want anyone to feel pressured or discouraged from giving because of the service
charge option.
Every gift, no matter the amount, helps The XLH Network continue to provide resources,
connection, and support to the XLH community. Your generosity allows us to keep
showing up for families, expanding programs, and advocating for better care and
understanding of XLH.
Please note that all previous donations have been transferred to the new platform and if
you are in need of a receipt for your tax-deductible donation, we are happy to provide that.
Thank you for your continued trust, support, and commitment to this community.

With gratitude,
Susan Faitos
Executive Director

Silas is a 9 year-old advocate from Kansas living with X-linked hypophosphatemia (XLH), a rare genetic disease that is o...
06/01/2026

Silas is a 9 year-old advocate from Kansas living with X-linked hypophosphatemia (XLH), a rare genetic disease that is often misunderstood, overlooked, and misdiagnosed. In 2019, Silas was diagnosed with a spontaneous case through genetic testing, beginning a journey of learning, resilience, and advocacy for his family.

Despite being born a healthy baby, Silas had fallen to the bottom of the growth charts by twelve months old. Over time, his loved ones began noticing bowing of his legs and a delay in walking, which did not occur until 16 months of age. When concerns were initially raised, the family was reassured that bowed legs often correct naturally by age 3.

Because Silas was otherwise a happy, active child with no obvious limitations, they chose to continue monitoring while hoping for improvement. By his 3-year checkup, Silas had a pronounced waddling gait and had started expressing occasional leg pain. X-rays revealed the significant bowing but also widened bone ends and rigid growth plates.

Follow-up labs showed low vitamin D levels and elevated parathyroid levels. This led his pediatrician to suspect a form of rickets and he recommended consultation with a nephrologist at a children’s hospital. Silas's family quickly learned that because XLH is so rare, many medical professionals may never encounter a patient with the disease during their careers.

Silas and his family feel incredibly fortunate to have been placed in experienced hands during such a vulnerable time. After a few months of trial medications and insurance delays, Silas was able to begin an FDA-approved treatment for XLH. While it has not eliminated every challenge, it has significantly improved his quality of life and provided greater hope for his future.

Today, Silas and his family are passionate about raising awareness for XLH. They have found invaluable support through stories shared within the broader XLH community on social media and during events supported by the XLH Network. Through advocacy, Silas hopes to educate others by bringing greater visibility to XLH and the importance of timely access to treatment.

Today kicks off the month of June, which is officially XLH Awareness Month! 🧬✨The XLH Network has an incredible lineup o...
06/01/2026

Today kicks off the month of June, which is officially XLH Awareness Month! 🧬✨

The XLH Network has an incredible lineup of fun ways to engage, connect, and advocate for our rare disease community throughout the entire month of June. Whether you want to share your personal story, join community events, or help educate others, there is a place for you.

Let's make some noise, spread the word, and show the world what it means to be ! 💪💜🩵

✏️Mark your calendars because June 23rd is XLH Awareness Day!

👉 Head over to the XLH Network to check out the advocacy toolkit, find events, and learn how you can get involved today!

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