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Santa Clarita Family Searches For Treatment To Save Two-Year-Old Boy

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Save Damian Santa Clarita Boy 1
Photo Courtesy of Brittany Markham

A Santa Clarita family is searching for treatment to save a two-year-old boy as his rare genetic disorder, sometimes referred to as “baby Alzheimer’s,” continues to take its toll. 

Damian Markham is a happy, young child who “waves at everybody he sees.” A few months ago, his mother Brittany Markham, started to see signs of regression. 

“He was always late on getting to his milestones,” Brittany said. “But then we started to see him go back.”

After being able to walk, Damian started getting weaker. The disease advanced to the point where he is not able to even sit up on his own. 

A blood test showed signs of possible liver damage. An ultrasound later revealed Damian’s liver was enlarged.

The Markham family took Damian to Children’s Hospital where doctors performed a liver biopsy to rule out cancer. 

During surgery, doctors found high levels of fatty material in the liver cells. 

After weeks of searching, the Markhams finally had a diagnosis — Damian had a rare genetic disorder called Acid Sphingomyelinase Deficiency (ASMD). 

“My world came crashing down, it is the worst thing anyone can experience,” Brittany said upon hearing the diagnosis. “He can die without treatment.”

ASMD, also known as Niemann-Pick disease, is a progressive genetic disorder that results from a deficiency of the enzyme acid sphingomyelinase, which is required to break down a fatty substance in the body. 

Damian has “Type A,” which has an onset in infancy. This type of disorder leads to loss of muscle tone, failure to thrive and rapid neurodegeneration.

If nothing is done to stop or slow the disease’s progression, Damian is not expected to live past age five, according to his mother. 

In an age of crowdfunding, the Markham family has turned to their community to raise the money needed to fast-track the Wylder Nation Foundation’s research on ASMD and initiate a clinical trial in time to save Damian’s life.

“I’m devastated, but I’m also determined,” Brittany said. “Treatments have been in development and if they can only get more funding and public exposure, it may be done in time for Damian to be part of the clinical trial.”

Damian at Children’s Hospital Los Angeles. Photo Courtesy of Brittany Markham

The Wylder Nation Foundation is the only nonprofit dedicated to raising money for research to find a cure for ASMD.

Doctors told Damian’s mother most treatments can take upwards of $1 billion and 20 years to complete, however, researchers are on the “tail end” of that timeline. 

“We are really close to curing this disease. The science is there they just need manpower,” Brittany explained. “There is a lot of paperwork for (Food and Drug Administration) approval and to create the manual for the treatment.”

An estimated $3 million is needed to complete the treatment — saving many young lives, his mother said. 

In just a few months, the community has raised nearly $100,000 of the $500,000 goal. 

“That is one of the only silver linings, the community has been so supportive,” Brittany said. “When I posted on social media, so many parents reached out to say they are going through the same thing.”

Damian recently turned two, a milestone his family made sure to celebrate to the fullest. 

“We made it the best birthday it could be,” his mother said. “Thinking about the possibility that Damian may only have a handful of birthdays to enjoy, I put a lot of pressure on myself to make this birthday one to remember.”

The road ahead for the Markhams is long, but Brittany is hopeful for the future.

“Some people deal with trials and are blessed with those around them who help,” she said. “We are so close to a treatment. This would save him and all of the other babies.”

For more information and to donate, visit here

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1 Comment

1 Comment

  1. Zoe

    June 5, 2021 at 8:02 pm

    #savedamian!

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Community Remembers Fallen Firefighter Tory Carlon Killed In Agua Dulce Shooting

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Firefighter Tory Carlon Agua Dulce Shooting (1)
Photo Courtesy of the L.A. County Fire Department

The community celebrated the life of fallen firefighter Tory Carlon, who was killed while at his station in an Agua Dulce shooting, with a service at The Forum on Thursday. 

Carlon was remembered as a loving father, husband and dedicated public servant who “was truly loved by our department,” said Los Angeles County Fire Chief Daryl Osby.

“This loss is extremely heartbreaking and tough, but also what remains in the hearts of many of us is Tory and how fondly we remember him for the man that he was,” Osby said.

Bagpipers and a drumline opened the ceremony at the iconic Inglewood stadium, filled with friends, family and fellow firefighters. 

John Denton, a chaplain for the Los Angeles Fire Department, led the prayer and added he was able to really get to know Carlon through his family. 

Carlon was a member of the department for over 20 years, who started as an explorer, then moved onto the United States Forest Service before joining L.A. County. 

Osby spoke about the “fire family,” noting the support shown at Joslyn Carlon’s graduation where hundreds of firefighters showed support for the young woman who just lost her father.

“Words cannot express how I miss seeing his smile,” Joslyn said at the memorial. “I looked up to him in so many ways, we had such a special daddy, daughter relationship.”

Captain David Gillotte, president of L.A. County Fire Fighters Local 1014, said to the hundreds of department members in the crowd there was “strength in our solidarity.” 

Carlon was a “jokester,” who made everyone smile at the station and made the world a better place, Gillotte said. 

“My only with is I said this in person, but I think you know, I love you,” said Firefighter-Paramedic Gary Reichman, a longtime friend.

On Tuesday, the department honored Carlon with a flag ceremony at Fire Station No. 131 in Palmdale to dedicate the Stars and Stripes which were raised during his “last assignment.”

After the ceremony, the flag was presented to his family, remembering the firefighter taken too soon. 

Firefighter Tory Carlon Agua Dulce Shooting (2)
Photo Courtesy of the L.A. County Fire Department

Just before 11 a.m. on June 1, an off-duty firefighter opened fire at Station 81 in Agua Dulce. 

Two firefighters were struck by gunfire, with Carlon sustaining fatal injuries. 

The second victim, Captain Arnie Sandoval, was in “critical, but stable” condition after the shooting.

“We all recognize that the work that our firefighters and firefighter-paramedics do is a very dangerous and arduous profession, and in many times, they put their lives in danger to protect them and serve others when they receive 911 calls for service, but yet as a fire chief, I never thought that when our firefighters face danger that they would face that danger in one of our community fire stations,” Osby said on the day of the incident.

The off-duty firefighter was found dead with a self-inflicted gunshot wound at his residence after setting the building ablaze, according to the fire chief. 

Carlon leaves behind his wife, Heidi, and three young daughters.

“Everyone who knew Tory, loved him. He was an extremely dedicated father and husband who brought a sense of calm to everyone,” Deborah Stilson wrote in a GoFundMe. “He absolutely loved being a firefighter and to serving others. His family and friends are devastated by this loss.”

To support the Carlon family, visit here.

Note: This story has been updated with additional quotes from the memorial service.

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Six Flags Magic Mountain Lifts Capacity Limit, Modifies Mask Requirement

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Six Flags Magic Mountain
Photo Courtesy of Six Flags

Six Flags Magic Mountain and Hurricane Harbor have lifted capacity limits and removed the mask requirement for fully vaccinated guests.

Starting June 15 as California fully reopens, both of the Valencia parks are now welcoming out of state residents, with no reservations required for any visitors, according to Jerry Certonio, manager of marketing and communications for Magic Mountain. 

It is highly recommended that all unvaccinated guests continue to wear masks, especially while indoors, Certonio added. 

Team members will continue to wear masks and undergo temperature screening, according to the spokesperson. 

Other Southern California theme parks, including Disneyland, have also lifted the mask mandate for fully vaccinated guests. 

The California Blueprint for a Safer Economy was lifted Tuesday, with certain restrictions in place for “high risk” activities.

On April 1, Magic Mountain opened its gates for the first time since the pandemic, becoming the first amusement park to reopen in Los Angeles County.

The “Thrill Capital of the World” closed on March 13, 2020, with Six Flags officials expecting at the time to evaluate reopening “by the end of the month.” That closure was first extended until mid-May, later lasting over a year. 

For more information, visit the Six Flags Magic Mountain website.

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L.A. City Pools To Repen Just In Time For Heatwave

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LA County Pool Lifeguard

Several City of Los Angeles pools are reopening on Monday just in for the triple-digit heatwave to help Angelenos stay cool.

On June 14, the City is opening 26 pools, including nine in the San Fernando Valley, after being closed last season due to COVID-19 concerns, according to the L.A. Department of Recreation and Parks and Recreation

This year, L.A. City Parks pools will be providing swim lessons, aquatic team sports, junior lifeguarding, and recreational swimming following COVID-19 guidelines and protocol, the department said in a statement.

The large pool at Hansen Dam is reopening, as well as pools in Canoga Park, Northridge, North Hollywood, Reseda, Sherman Oaks, Sun Valley and Van Nuys. 

In-person and online registration for joining aquatic team sports, swimming lessons and junior lifeguard are expected to be available starting at 9 a.m. Saturday, June 19. 

Prospective participants are welcome to visit pools in person beginning Monday before committing to a class or program, according to the department. 

The Los Angeles Recreation and Parks Department offers families and community members many affordable and safe aquatic activities at their public pools, lakes and beaches.

With drowning the second-leading cause of accidental death for children under 14, kids must learn to swim and understand how to be safe around all bodies of water. Swim L.A. is one of many programs offered by the City’s Aquatics Division, according to department officials.

Swim L.A. ensures that young Angelenos between the ages of 4 and 17 have more opportunities to learn how to swim. 

For more information and to register for swim classes or aquatic sports, visit here.

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