𝘛𝘩𝘪𝘴 𝘪𝘴 𝘵𝘩𝘦 𝘭𝘢𝘵𝘦𝘴𝘵 𝘪𝘯𝘴𝘵𝘢𝘭𝘭𝘮𝘦𝘯𝘵 𝘪𝘯 𝘰𝘶𝘳 “𝘍𝘢𝘤𝘦𝘴 𝘰𝘧 𝘕𝘔” 𝘴𝘦𝘳𝘪𝘦𝘴, 𝘱𝘳𝘰𝘧𝘪𝘭𝘪𝘯𝘨 𝘴𝘰𝘮𝘦 𝘰𝘧 𝘵𝘩𝘦 𝘮𝘦𝘮𝘣𝘦𝘳𝘴 𝘰𝘧 𝘰𝘶𝘳 𝘶𝘯𝘪𝘲𝘶𝘦 𝘢𝘯𝘥 𝘥𝘪𝘷𝘦𝘳𝘴𝘦 𝘕𝘔 𝘊𝘰𝘮𝘮𝘶𝘯𝘪𝘵𝘺.
Mila Giselle Davila is all smiles and sunshine. At five years old, the Houston, TX resident exudes a vibrancy that transcends the challenges of living with Nemaline Myopathy (NM), a rare congenital muscle disease. But Mila’s journey began with a fight, a fight that would shape her life and the lives of those who love her most.
A Fight for Survival
“Mila was hospitalized at 3 months old due to respiratory failure,” Leticia Davila, Mila’s mother, recalls. “We were having a hard time feeding her. She went in for a swallow study & we discovered that she was aspirating. She was in the hospital for 4 weeks with aspiration pneumonia & RSV. We caught it just in time, we could have lost her.”
It was during this hospitalization that Mila’s diagnosis of ACTA1 NM came to light. “During her stay she had numerous tests done, including a genome sequencing test, which is how we found out she has NM. It is de novo,” Leticia explains, using the scientific term to describe how the mutation arose spontaneously in Mila and isn’t present in either parent. “Neither I, nor my husband, are carriers.”
Nemaline Myopathy is a chronic condition that affects muscle strength and development. Leticia wants people to understand the realities of NM. “Some of the misconceptions are that this disease is something that goes away. It doesn’t. There’s no cure. Yes, you can get stronger especially if you do therapy but it’s something that you have to live with forever,” she says.
Living with Nemaline Myopathy
Living with NM means Mila needs assistance to breathe and eat. “Mila has several devices to help her respiratory-wise,” Leticia shares. “She also sleeps with a ventilator and eats via feeding tube.”
Despite the limitations NM imposes, Mila’s spirit is far from dampened. “Mila took longer to crawl, longer to walk, & longer to talk,” Leticia says. “She can’t jump or run yet but it doesn’t stop her from trying.”
An Unbreakable Spirit
And try she does. Mila’s days are filled with the joys of childhood, even if they look a little different. “Mila loves spiderman & all things princess,” Leticia beams. “She tries her best to keep up with her big brother. They’re a year apart and he’s so good with her.”
A Hopeful Future
Leticia’s greatest hope? A future where NM is a thing of the past. “I hope a cure is found during Mila’s lifetime,” she says, echoing the dreams of countless families grappling with this rare disease.
Thriving in the Face of Adversity
Mila Giselle Davila is a testament to the human spirit’s ability to thrive in the face of adversity. Her story is one of courage, resilience, and the unwavering love of a family. As research into NM continues, Mila, and countless others like her, inch closer to a future filled with possibility.