A Visit With a Princess: Alana with XLH

September 30, 2014

Story by Betsy Landin

Last night was rough. I had just gotten back to my parents house in Orlando from Clearwater, Florida after a successful hometown premiere for the sequel to the movie Dolphin Tale. It had been a long and stressful week promoting my work in both Florida and Los Angeles. Upon my arrival to the sunshine state, all I could think about other than work was seeing my three little nieces and nephew.

My parents joined me on the trip to my cousin’s house to visit Aulani (7), Ally (5), Alana (2), and AJ (1). When I left Florida to relocate to Los Angeles, Alana was still in her mother’s belly and the older girls were small. I had arrived just past the little ones bedtime. It was near nine o’clock and everyone was already wearing pajamas. They didn’t know that Titi (Auntie) Betsy was coming over. They didn’t even know I was in town, but as soon as Aulani and Ally saw my face they lit up and yelled, “Titi!” and ran up for hugs and kisses. I noticed that the smallest of the bunch, AJ, was cranky from all the commotion and although I had seen him plenty of times, I was a nonetheless a stranger. In the midst of the small chaos I realized that Alana was missing. She had yet to greet me.

photo-2I finally found her curled up on the couch. She looked happy to see me, but the discomfort and pain on her face was evident. I gave her a hug and she embraced me and then went back to her former state. My cousin Natalia said Alana hadn’t eaten much and was refusing to take her medication. You see, my niece was having one of those rough days in what will be a lifelong battle with (XLH), also called X-linked dominant hypophosphatemic rickets, a rare genetic disease that affects about one in 20,000 people. It causes deformities in her lower limbs and short stature leaving her with constant bone, muscle, and joint pain.

We tried cheering her up by sharing with her photos of Winter (my co-star dolphin from the Dolphin Tale movies) as my dad swayed her back and forth in a loving way, bribing her with happy meals to get her to eat something, but nothing was working. She looked defeated. Then my cousin had a brilliant idea. “Let’s show Titi Betsy all of your party favors for your Cinderella party!” She lit up. For the first time that night, she was Alana again. The Alana I knew.

As her sisters helped gather all of her party favors for me to see, I was shaken by a high pitch cry that came from the closet. I couldn’t believe the pain I was hearing in that child and when I asked what was wrong, my cousin said, “She’s just in pain, but she wants to wear her costume for you.” I could see the helplessness in Natalia’s tired expression from a long day of caring for her child. She worried about her and whether or not she would have to take her to the hospital again.

Alana finally came out of the closet and unveiled her princess attire. She had a giant smile and quickly cheered along with me as I approved her beautiful costume, crown, and high heel shoes. I quickly put my hair in a bun, grabbed a tiara, and played along with her and her sisters. She was giggling and talking! I could see how she had forgotten if just for a second that she had been in pain. After photos, we cuddled up together and took some selfie shots with our matching global genes necklaces. Although I knew she was unaware of what that symbol actually meant I could see that she knew it was important. She knew it made her special and that now I shared it with her.

photoWe finally said our goodbyes for another few months. I didn’t want to leave them. It’s heartbreaking every single time for me. I know that next time they’ll be bigger and they’ll teach me something new they’ve learned and I’ll have missed a birthday or a big event in their lives. As I got big hugs from everyone and I went to leave, I couldn’t help but notice a giant pile of paperwork. I didn’t have to ask. Natalia just looked over and said, “Those are all her medical bills. She didn’t qualify for disability…. We’ll figure it out.” I just nodded my head in agreement and gave her one last hug before walking out.

I left my cousin’s home that night with a different perception of what she goes through as a mom day in and day out. I visit often, but I’m not there to see the magnitude of how her life continues to change as the condition progresses. We have only recently received a diagnosis and doctors are still just trying to figure out the best way to treat her after having been misdiagnosed early on as having a lack in Vitamin D. Only after months of doctor’s visits and tests were they able to confirm her XLH and her doctor said she was the fourth case he had heard of in his career and the first of those he had treated. As a family, we have a long road ahead of us, but we are confident that God will guide us through it all. Alana is strong and independent and although she knows that she is different, it hasn’t stopped her one bit. She won’t have to fight alone. She’s got us… and family is forever.

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