Mia Robertson, the youngest daughter of Duck Dynasty’s Jase & Missy Robertson, has been born with a condition known as cleft lip and palate, a gap in the upper lip that can involve the gum as well.
The U.S. Centers for Disease Control and Prevention shares that about one in every 1,600 babies is born with a cleft lip with a cleft palate in the U.S.
Because of her condition, sweet Mia, who is now 18 years old, has been forced to undergo 13 surgeries, with the 14th taking place just recently. The family truly hopes this would be Mia’s last procedure before her problem is finally solved.
Throughout every surgery, the young girl remains positive. What’s most, she hopes she serves as inspiration for other young children who are born with the same condition. On her own initiative and with the help of her family, Mia established the Mia Moo Fund in order to assist in making certain that each and every child wears a smile on their face.
“One of the functions of the Mia Moo Fund is to spread awareness of the cleft lip and palate journey,” Missy Robertson told Christian Post. “The other one is to help with medical funds for the parents and the families living right here in America.”
On his podcast Unashamed, Jase Robertson shared an update on Mia’s condition and said that his daughter is recovering well.
“She’s doing great. She’s turned a corner,” he said, and then added, “Everything seems great, seems to be fine.”
“Surgery went a little longer than expected, but she is home and recovering,” the loving father told his podcast listeners. “Thank you for praying for her and for our family. She is a champion!”
Before the surgery took place, Missy spoke of her daughter’s condition and explained that she had been constantly asked about the number of procedures Mia would need to undergo in the future. “There is never any other response than ‘We just don’t know,’” Missy said. She then added that they rely on God for assistance. “Since she is 18 now, she is taking the lead in all the discussions and medical forms. It’s been a little strange,” Missy wrote. “But it’s just another reminder to lean on the Lord and that I’m not in control.”
Mia also hopes that she’s at “the finish line.”
“Hopefully the last time I’ll see my doctors in this setting! It’s been a long road but we are at the finish line,” brave Mia said.
The Robertson’s have also been preparing for a new addition to the family as they open the doors to their hearts and home for a child whose mother was unfit to take care of.
We wish Mia speedy recovery.
Meet Twins with the Rare Benjamin Button Syndrome, Who Became Symbols of Resilience
In a small Brazilian town, there resides an extraordinary duo of identical twins named Elis and Eloá. Their story serves as a beacon of resilience and the remarkable power of the human spirit. Afflicted with Hutchinson-Gilford Progeria Syndrome, a rare and fatal genetic disorder causing accelerated aging, these twins confront their adversities with remarkable grace and strength, earning admiration from people worldwide.
Understanding Hutchinson-Gilford Progeria syndrome
HGPS stands as an exceptionally rare disorder, impacting roughly 1 in 20 million newborns globally. Marked by rapid aging from early childhood, individuals with progeria often display growth delays, diminished body fat and hair, prematurely aged skin, joint stiffness, and severe cardiovascular issues. Typically, those with HGPS have an average life expectancy of about 14.5 years, though some may extend into their late teens or early twenties. This syndrome gained public attention through the film The Curious Case of Benjamin Button.
The condition is caused by a mutation in the LMNA gene, which produces the lamin A protein responsible for maintaining the structural integrity of the cell nucleus. The mutation results in the production of an abnormal version of the protein, called progerin, which causes cells to become unstable and die prematurely.
Elis and Eloá’s journey
Elis and Eloá swiftly captured attention because of their distinctive medical condition. Despite the physical hurdles imposed by progeria, their contagious smiles and steadfast optimism have emerged as beacons of hope and inspiration. Guilherme and Elismar, the twins’ parents, have dedicated their lives to offering the utmost care for their daughters, striving to ensure they experience as normal a life as feasible within the confines of their condition.
The family’s path has been far from easy. Their daily life is filled with demanding medical routines, including physiotherapy, aimed at addressing joint stiffness and preserving mobility. Despite these challenges, Elis and Eloá approach each day with remarkable bravery and an unparalleled enthusiasm for life, which is truly remarkable.
A global community of support
Elis and Eloá’s narrative has touched hearts worldwide, sparking a surge of solidarity from individuals and groups committed to promoting awareness about progeria and backing research endeavors. The Progeria Research Foundation, a pivotal entity in this realm, has played a vital role in propelling research forward and furnishing assistance to families grappling with the condition.
Through social media platforms, the twins’ journey is shared with a broad audience, fostering a sense of community and solidarity. Their family’s updates, documenting both the highs and lows of their daily lives, provide invaluable insights into the realities of living with progeria, while also spreading a message of hope and perseverance.
Advances in research and hope for the future
In recent years, there have been remarkable advancements in comprehending and addressing progeria. A notable milestone occurred in 2020 when the U.S. Food and Drug Administration (FDA) granted approval for the first progeria treatment: lonafarnib. This medication has demonstrated efficacy in prolonging the lives of children with progeria by mitigating the accumulation of progerin in cells, thereby decelerating the disease’s advancement.
Though a cure remains elusive, ongoing research presents promising prospects. Scientists are delving into gene-editing methodologies, like CRISPR, as potential means to rectify the genetic mutation at its root. For families such as Elis and Eloá’s, these breakthroughs offer a ray of hope for the future.
And in our other article, we recounted the remarkable story of a girl born without a nose, affectionately dubbed “Voldemort,” who refuses to let her differences define her.
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