Langston was nominated by her mother, who writes “Langston is our 3rd child. After a routine c-section we took our bundle of joy home to her brothers. At 4 months of age we noticed Langston wasn’t meeting milestones and wasn’t growing. After many many tests, scans, and blood draws we were hospitalized at 7 months. Langston would receive her feeding tube that has saved her life. At 13 months old Langston was diagnosed with Hypophosphatasia which is a genetic bone disease causing her to be more at risk to fracture. Finally we got the last piece of her genetic puzzle. At 18 months Langston was diagnosed with a rare form of mitochondrial disease called Leigh’s. This disease has a grim outcome. We were told that Langston would not walk, talk, or thrive. Well Langston is doing all those things and SO MUCH more. She is the strongest person I know and my hero.”
I had never heard of Leigh’s disease before this year, so when Langston was nominated I did a little research like I always do to know what to expect! I’ve done sessions before for other little girls with mitochondrial disease. What I didn’t expect to learn this time is that Leigh’s disease is usually fatal before the teenage years. In fact, Langston’s parents were told that she would not make it to five years old. Well she proved everyone wrong! She’s not only walking, she’s running! She’s not only talking, she’s laughing and singing! She’s not only made it to five years old, she’s in kindergarten and has all of her teachers wrapped around her fingers! Her magic worked on me too! The two hours that we had for her session were hilariously fun! She absolutely is a tiny dainty fairy and she wrapped me around her fingers just as fast as I’m sure that she’s gotten everyone else around her. She has an adorable little wobbly walk and the tiniest fairy voice with a wee wisp. Words really can’t convey how absolutely adorable she is. Green is the color for mitochondrial disease awareness. When putting on her green shoes I asked her if they matched her green earrings, and she quipped “no, my earwings are teal! Dey match my gwasses!”
When I left the session, I actually got in the car and called a friend of mine to cry on the phone to her on my way home. It is absolutely not fair. This girl is so perfect, and so precious.
Links from Langston’s mom:
Her facebook page: https://www.facebook.com/Teamsparkleprincess/
Info on Mitochondrial disease: https://www.umdf.org/