LEAH

Following her passions and staying optimistic

Leah, age 16,
living with XLH

Diagnosis of X-linked
hypophosphatemia (XLH) at age 2

“Early on, I was very bowlegged. My parents noticed it when I first started to walk. I remember we would be able to put a basketball between my legs when my feet were together. Even so, I’ve never had any surgeries to correct my legs. No one else in my family has XLH, but everyone is very supportive of me, including my 2 older twin brothers and my dad, Tom.”

I love horseback riding because it lets me forget about everything else and just ride.

What keeps Leah smiling

“I’m 16 and in 11th grade. I’ve discovered that I like math, so I can see myself going down the business math road at some point. I’m the manager of a field hockey team, which I enjoy, even though I physically can’t play anymore because of my knees. I also love swimming.

“One of my biggest passions is definitely horseback riding. I practice jumping and even do competitions with my horse Citron. It’s such a good fit for me because it’s one of the only sports that doesn’t involve running; I can also connect with other kids and be part of a community. Riding is a breath of fresh air after a stressful day at school, where I feel overwhelmed with all my homework.”

Starting CRYSVITA® (burosumab-twza)

“I’ve been on CRYSVITA for about 3 years now, and I feel better.”

Some common side effects of CRYSVITA include headache, injection site and hypersensitivity reactions, restless legs syndrome, and dizziness. Other common side effects are covered in the Important Safety Information on this page.

Embracing an optimistic outlook

“My family and friends inspire me, especially my mom. She’s been so positive throughout my life. All of my experiences in the hospital while I was growing up really put things into perspective for us. From an early age, my mom taught me that rough spots in life could always be worse—that’s really stuck with me.”

I learned what’s important in life and not to get caught up in the drama of smaller, petty things.

– Leah
 

“We’re so blessed to have met Bella and her family and that we’ve been able to take this journey together. It’s so good for Leah and Bella to talk to one another and understand what each other is going through. It’s also good for Bella’s mom and me because it gives us a good support system, too.”

– Michelle, Leah’s mother

Bella and Leah