What Disease Does Alfie Evans Have? Mitochondrial DNA Depletion Syndrome Symptoms

On Wednesday, 23-month-old Alfie Evans’ parents vowed to take their case to the Court of Appeal in a fresh attempt to take him to Italy, to seek treatment for his mysterious disease.

Although Evans’ degenerative neurological condition was not definitively diagnosed by the doctors, some experts believe the toddler has Mitochondrial DNA depletion syndrome (MDS) — the same disease that affected Charlie Gard — an infant whose parents were embroiled in a similar legal battle last year. After the same outcome as Evans’ case, Gard was removed from life support and he died a week before turning a year old.

If it is proved that Evans indeed has a mitochondrial disease, he would be the 17th person to be diagnosed with the rare inherited condition that causes muscle weakness and loss of motor skills.

According to the U.S. National Library of Medicine, signs and symptoms of MDS typically begin in early childhood. While a baby with MDS maybe born healthy, muscle weakness sets in within a few months of birth and as it gradually progresses, the patient loses motor skills such as standing, walking, eating, and talking.

In some cases, infants with MDS might struggle to control eye movement, leading to droopy eyelids (progressive external ophthalmoplegia). Some other symptoms may include enlarged liver (hepatomegaly), frequent seizures, hearing loss caused by nerve damage (sensorineural hearing loss).

As the disease enters advanced stages, breathing on one’s own becomes difficult and the patient has to frequently rely on mechanical ventilation. Respiratory failure is the most common cause of death in people with MDS, often occurring in childhood. Despite the increased physical deterioration, mental faculties like intelligence are not hampered.

There is no effective treatment or cure for MDS, although some experimental procedures are in existence. Patients affected with MDS rarely survive into their adolescent days. 

Evans, born on May 9, 2016, was placed on life support at Alder Hey Children’s Hospital in Liverpool in December 2016, after the infant started experiencing “jerking, seizure-like movements” which was later diagnosed to be due to a chest infection, Metro reported. 

Although Evans’ parents were told that their son might not survive the infection, the infant was able to beat it and even began breathing on his own. However, soon the infant started getting chronic seizures and he had to be put back on life support.

Evans entered what the doctors described as a “semi-vegetative” state after living in a coma for over a year. In December 2017, the doctors of the hospital believed there was no hope for improvement in Evans’ health and filed a case with the high court to remove parental rights and withdraw ventilation.

Alder Hey Hospital argued that Evans had suffered “catastrophic degradation of his brain tissue” that had wiped out most of the white matter of his brain. Although the parents counter-argued that Alfie was responding to touch, doctors explained that it was an “auto-pilot response” since his brain cortex was still “live” and that his body was prone to spasms.

After the high court and the Supreme Court of the United Kingdom ruled against the parents’ wish to fly the infant to the Bambino Gesu Hospital in Rome, which has links to the Vatican, Three Courts of Appeal and the European Court of Human Rights also agreed there was no hope left for Evans, the Mirror reported. 

Alfie was taken off life support on Monday but he continued to breathe on his own and could drink water, his father told supporters.

Supporters react to the announcement that the European court of human rights refused to intervene in the case of British toddler Alfie Evans outside Alder Hey children’s hospital in Liverpool, northwest England, on April 23, 2018. Photo: Getty Images/ Paul Ellis

Share and Enjoy

"Caravan" of migrants reaches US border

TIJUANA, Mexico — About 130 Central Americans, mostly women and children, have arrived at the U.S. border with Mexico in a “caravan” of asylum-seeking immigrants that has drawn the fury of President Donald Trump. Two busloads arrived late Tuesday in the Mexican border city of Tijuana at two migrant shelters just steps from one of the most fortified stretches of border separating the U.S. from Mexico. They joined another 50 or so who arrived in Tijuana over the last week or two.

Four more busloads of about 200 Central Americans — mostly women and children but including some men — were expected to arrive in Tijuana Wednesday, said Alex Mensing, project coordinator for Pueblos Sin Fronteras, which is organizing the effort.

U.S. lawyers planned to lead clinics later this week on U.S. asylum law to tell the immigrants what to expect when they seek asylum. The first groups plan to try to enter the U.S. on Sunday at San Diego’s border crossing.

Mr. Trump and senior aides have portrayed the caravans and the asylum seekers as evidence of a dysfunctional border and a serious threat. The president tweeted this week that he has issued orders “not to let these large Caravans of people into our Country. It is a disgrace.”

The caravans have been a fairly common tactic for years among advocacy groups to bring attention to Central American citizens seeking asylum in the U.S. to escape political persecution or criminal threats from gangs.

But the latest one drew more attention because Mr. Trump’s attention from almost the moment it began on March 25 in the Mexican city of Tapachula, near the Guatemalan border. While it slowly traveled across Mexico, Mr. Trump used it as an example to try to win more support for his planned border wall — even though the asylum-seekers plan to turn themselves in to border inspectors.

Taxi driver Jovanne Torres from El Salvador said Wednesday after arriving in Tijuana Tuesday that Mr. Trump’s attacks on the caravan make him doubt whether he’ll succeed in getting asylum for himself, his wife and his daughters ages 4 and 10 months — but he still plans to try.

Torres, 37, said he fled his hometown near the country’s capital of San Salvador and joined the caravan days after a gang threatened to kill him and his wife when he refused to give a free ride to a gang member.

He thinks he could be killed if he goes home and decided against seeking asylum in Mexico because he wants to join relatives in Houston.

“Trump’s words have made it difficult for us,” he said.

This caravan’s numbers pale compared to the roughly 200,000 people who were arrested at the border in Texas’ Rio Grande Valley during the spring of 2014. Thousands of Haitians seeking to enter the U.S. turned themselves in to U.S. border inspectors at the Tijuana-San Diego border crossing — the nation’s busiest.

U.S. Customs and Border Protection has space to hold about 300 people at the crossing, said Pete Flores, director of the agency’s San Diego field office. It turns them over to U.S. Immigration and Customs Enforcement to determine if they should be held long-term of if they can be released while their cases are pending, often wearing ankle monitors that track their movements.

The San Diego border crossing was so overwhelmed by Haitians in 2016 that U.S. officials worked with their Mexican counterparts to create a ticketing system that let the Haitians in over time. Some waited their turn in Tijuana more than five weeks.

More recently, asylum seekers have had to wait at most only a few hours, never overnight, Flores said. If asylum-seekers make it through initial screenings with asylum officers by establishing “credible fear” of being returned to their homelands, they are allowed in and face what can be lengthy proceedings before U.S. immigration judges.

Ginger Jacobs, a San Diego immigration attorney who helped Haitians seeking entry to the U.S. in 2016, said Mr. Trump’s concerns about a rush of Central Americans seeking asylum were “completely overblown.”

“I don’t see this caravan thing being a big deal,” she said. “I see it as something the port will be able to handle competently and professionally.”

Nielsen said Wednesday that anyone who makes false claims to immigration authorities is subject to criminal prosecution. The same goes for anyone who assists or coaches immigrants on making false claims.

Nielsen’s threat is consistent with the administration’s narrative of widespread “asylum fraud” and claims that asylum-seekers are coached on what to tell U.S. authorities.

The secretary also said asylum seekers in the caravan should seek protection in the first safe country they reach, including Mexico.

U.S. Attorney General Jeff Sessions said he may assign additional immigration judges to handle caravan cases.

The Juventud 2000 migrant shelter, on the edge of Tijuana’s red-light district, is filled with dome-shaped tents to accommodate more than 200 arrivals.

Its director, Jose Maria Garcia Luca, said two previous caravans in May and November of last year had about 100 people each. Those who sought asylum reported no significant delays entering the U.S.

“This is nothing like the Haitians,” Garcia Luca said. “That was chaos.”

Share and Enjoy