Ayla Summer Mucha startled her parents by beaming brightly when she was born in December 2021. Her parents fell in love with her right away, despite their first confusion due to an unusual illness that caused her smile to be permanent. Ayla is now well-known on social media, and her charming smile is adored by people everywhere.On December 30, 2021, Cristina Vercher and her husband Blaize Mucha were eager to finally see their newborn girl after nine months of waiting. However, unexpected news was delivered by the doctors during the C-section delivery.Due to bilateral macrostomia, Ayla Summer Mucha’s mouth did not form normally from birth.When a baby is growing inside its mother, the corners of the mouth sometimes don’t meet correctly, a condition known as a facial cleft. Just 14 cases similar to it have been documented in medical books due to its extreme rarity.Because the ultrasounds revealed no issues, Ayla’s parents were unaware of this until after she was born. They became really concerned when they noticed that she was speaking with her mouth agape. Even though Ayla was so small, the problem was evident, which startled and worried Ayla’s parents, who are now 23 and 22 respectively.”I had never met anyone born with a macrostomia, and neither Blaize nor I knew about this condition,” Adelaide’s Vercher remarked. Thus, it came as a huge surprise.Not just the parents expressed surprise.
A baby with bilateral macrostomia was beyond the capabilities of even the medical professionals.The fact that it took hours for a doctor to respond to our questions made it much more concerning. She added that the hospital was also ignorant of this uncommon ailment. “As a mother, all I could focus on was my mistakes.”However, medical professionals informed the anxious parents that there was nothing more they could have done. Cristina was concerned that she might have erred during her pregnancy or contributed to her daughter’s illness.She remarked, “I couldn’t stop wondering where I might have made a mistake as a mother.” They were convinced, nevertheless, that they had no influence over this problem and that they were not to blame following days of genetic testing and scans.The Mucha family concentrated on assisting Ayla in managing her illness, which limits her food and drink options, comfortably. Babies with this illness occasionally require surgery to become better.Ayla’s parents posted her story on social media so that people may learn more about it. Around 6.5 million users enjoyed Ayla’s adorable smile on TikTok. The amount of support that the Muchas received shocked them.”I just looked it up, and there are only 14 cases like hers that are known,” a commenter said. She is truly unique. Mom, you ought to feel proud.Regarding Ayla’s smile, another internet user stated, “She is gorgeous and just perfect the way she is.” Her smile made me smile as well.But nasty things about Ayla were said by several people online. But Ayla’s supporters swiftly came to her aid.”Your daughter is stunningly gorgeous. Never pay attention to such nasty folks. One individual remarked, “She’s like an angel.” Someone else posted, “Oh my gosh! You’re quite adorable! Pay no attention to their hurtful remarks. You’re simply too cute.”You’re a strong mom, and your daughter is beautiful,” commented another commenter. I apologize for exposing you to those hurtful remarks.Vercher said, “I think it’s important to be kind and accept everyone, no matter what,” to the hurtful remarks made about her child.If she and her child were in a similar circumstance, she hoped that people would treat them with the same respect. Vercher said that anyone could experience similar circumstances. She added that since you have no control over what other people say on social media, it can be a difficult place.Vercher ignored the criticism in favor of highlighting the encouragement and kind remarks. “We’re really proud of ourselves, so we won’t stop sharing our experiences and favorite memories,” she remarked.
These bugs come out at nighttime, and attacking victims, they silently kill or leave them with a lifelong infection
When Emiliana Rodriguez was a little girl, she recalls watching friends play a nighttime soccer match when one of the players abruptly died on the pitch.
Unaware of what had transpired, Rodriguez, a native of Bolivia, developed a phobia of the dark and the “monster”—the silent killer known as Chagas—that she had been told only appears at night.
Chagas disease is a unique sort of illness that is spread by nocturnal insects. It is also known as the “silent and silenced disease” that infects up to 8 million people annually, killing 12,000 people on average.
Emiliana Rodriguez, 42, discovered she had to live with Chagas, a “monster,” after relocating to Barcelona from Bolivia 27 years ago.
“Night is when the fear generally struck. I didn’t always sleep well,” she admitted. “I was worried that I wouldn’t wake up from my sleep.”
Rodriguez had specific tests when she was eight years old and expecting her first child, and the results indicated that she carried the Chagas gene. She recalled the passing of her buddy and remarked, “I was paralyzed with shock and remembered all those stories my relatives told me about people suddenly dying.” “I wondered, ‘What will happen to my baby?’”
Rodriguez was prescribed medicine, though, to prevent the parasite from vertically transmitting to her unborn child. After her daughter was born, she tested negative. Elvira Idalia Hernández Cuevas, 18, was unaware of the Mexican silent killer until her 18-year-old son was diagnosed with Chagas.
Idalia, an eighteen-year-old blood donor from her birthplace near Veracruz, Mexico, had a positive diagnosis for Chagas, a disease caused by triatomine bugs, often known as vampire or kissing bugs and bloodsucking parasites, when her sample was tested.
In an interview with the Guardian, Hernandez stated, “I started to research Chagas on the internet because I had never heard of it.” When I read that it was a silent murderer, I became really afraid. I had no idea where to go or what to do.
She is not alone in this; a lot of people are ignorant of the diseases that these unpleasant bugs can spread. The term Chagas originates from Carlos Ribeiro Justiniano Chagas, a Brazilian physician and researcher who made the discovery of the human case in 1909.
Over the past few decades, reports of the incidence of Chagas disease have been made in Europe, Japan, Australia, Latin America, and North America.
Kissing bugs are mostly found in rural or suburban low-income housing walls, where they are most active at night when humans are asleep. The insect bites an animal or person, then excretes on the skin of the victim. The victim may inadvertently scratch the area and sever the skin, or they may spread the excrement into their mouth or eyes. This is how the T. cruzi infection is disseminated.
The World Health Organization (WHO) estimates that between 6 and 7 million people worldwide—roughly 8 million people in Mexico, Central America, and South America—have Chagas disease; the majority of these individuals remain oblivious to their illness. These estimates are provided by the Centers for Disease Control and Prevention (CDC). The persistent infection might be fatal if untreated. According to the Guardian, Chagas disease kills over 12,000 people year, “more people in Latin America than any other parasite disease, including malaria.”
Despite the fact that these bugs have been found in the United States—nearly 300,000 people are infected—they are not thought to be endemic.
While some people never experience any symptoms, the CDC notes that 20 to 30 percent experience gastrointestinal or heart problems that can cause excruciating pain decades later.
Furthermore, only 10% of cases are detected globally, which makes prevention and treatment exceedingly challenging.
Hernández and her daughter Idalia went to see a number of doctors in search of assistance, but all were also uninformed about Chagas disease and its management. “I was taken aback, terrified, and depressed because I believed my kid was going to pass away. Above all, Hernandez stated, “I was more anxious because I was unable to locate any trustworthy information.”
Idalia finally got the care she required after receiving assistance from a family member who was employed in the medical field.
“The Mexican government claims that the Chagas disease is under control and that not many people are affected, but that is untrue,” Hernández asserts. Medical practitioners misdiagnose Chagas disease for other heart conditions because they lack knowledge in this area. Most people are unaware that there is Chagas in Mexico.
The World Health Organization (WHO) has classified chagas as a neglected tropical disease, which means that the global health policy agenda does not include it.
Chagas is overlooked in part because, according to Colin Forsyth, a research manager at the Drugs for Neglected Diseases Initiative (DNDi), “it’s a silent disease that stays hidden for so long in your body… because of the asymptomatic nature of the initial part of the infection.”
Forsyth went on to say, “The people affected just don’t have the power to influence healthcare policy,” making reference to the impoverished communities. It’s kept hidden by a convergence of social and biological factors.
Chagas, however, is becoming more well recognized as it spreads to other continents and can also be transferred from mother to child during pregnancy or childbirth, as well as through organ and blood transfusions.
The main objective of the Chagas Hub, a UK-based facility founded by Professor David Moore, a doctor at the Hospital for Tropical Diseases in London, is to get “more people tested and treated, and to manage the risk of transmission, which in the UK is from mother to child,” according to Professor Moore.
Regarding the WHO’s 2030 aim for the eradication of the disease, Moore stated that progress toward it is “glacial” and added, “I can’t imagine that we’ll be remotely close by 2030.” That seems improbable.
Two medications that have been available for more than 50 years to treat chagas are benznidazole and nifurtimox, which according to Moore are “toxic, unpleasant, not particularly effective.”
Although the medications are effective in curing babies, there is no guarantee that they will prevent or halt the advancement of the condition in adults.
Regarding severe adverse effects, Rodriguez remembers getting dizziness and nausea as well as breaking out in hives. She completed her therapy, and she gets checked out annually.
Moore goes on to say that while creating stronger anti-Chaga drugs is crucial to stopping the disease’s spread, pharmaceutical companies are currently not financially motivated to do so.
As president of the International Federation of Associations of People Affected by Chagas condition (FINDECHAGAS), Hernández is on a mission to raise awareness of the condition until there is a greater need on the market for innovative treatments.
In Spain, Rodriguez is battling the “monster” as part of a campaign to increase public awareness of Chagas disease being conducted by the Barcelona Institute for Global Health.
“I’m tired of hearing nothing at all,” Rodriguez declares. “I want Chagas to be discussed and made public. I’m in favor of testing and therapy for individuals.
They are being heard, too.
World Chagas Disease Day was instituted by the WHO on April 14, 1909, the day Carlos discovered the disease’s first human case.The WHO states that “a diversified set of 20 diseases and disease categories are set out to be prevented, controlled, eliminated, and eradicated through global targets for 2030 and milestones.” And among them is Chagas.
To prevent a possible infestation, the CDC suggests taking the following steps:
Close up any gaps and fissures around doors, windows, walls, and roofs.
Clear out the rock, wood, and brush piles close to your home.
Put screens on windows and doors, and fix any tears or holes in them.
Close up gaps and crevices that lead to the exterior, crawl areas beneath the home, and the attic.
Keep pets inside, especially during the evening.
Maintain the cleanliness of your home and any outdoor pet resting places, and check for bugs on a regular basis.
If you believe you have discovered a kissing insect, the CDC recommends avoiding crushing it. Alternatively, carefully put the bug in a jar, fill it with rubbing alcohol, and then freeze it. It is then recommended that you bring the bug’s container to an academic lab or your local health authority so that it can be identified.
Please tell this tale to help spread the word about an illness that goes unnoticed!
Leave a Reply