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.”
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.”
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L.A. Mayor Signs Camping Ordinance Aimed At Restricting Homeless Encampments
Los Angeles Mayor Eric Garcetti signed an ordinance on Friday aimed at restricting homeless encampments in certain areas of the city.
The ordinance, which is set to take effect 30 days from the signing date, bans camping near “sensitive” facilities including within 500 feet of schools, daycares, parks and libraries, according to the L.A. City Council agenda.
In addition, the measure also restricts sitting, lying, or sleeping as well as storing, using, maintaining and placing personal property in any public right-of-way such as ramps, driveways or bike lanes, among others.
On Wednesday, the council voted 13-2 to approve the measure before Garcetti’s signature.
Councilmembers Mike Bonin and Nithya Raman voiced opposition to the ordinance, with Bonin recalling his own struggle with housing.
“Some of those nights I slept in the car, some of those nights, when my car was in the shop, I slept on the beach. I cannot tell you how much turmoil is in your heart when the sun is setting and you don’t know where to sleep,” Bonin said. “I cannot tell you how demoralizing and dehumanizing and defeating that experience is when you don’t know where you’re going to sleep.”
City Councilman Mitch O’Farrell said the measure helps regulate shared public spaces while “acting with compassion and purpose” to help people experiencing homelessness.
“This ordinance establishes fair and clearly defined rules for how sidewalks in Los Angeles are regulated — while linking those rules to a comprehensive, compassionate strategy for street engagement that will establish reasonable pathways to positive outcomes and, ultimately, permanent homes,” O’Farrell said.
In order to enforce the new order, the City Council has to take action through a resolution to designate a certain area for enforcement, according to the ordinance.
The city plans to send out “street engagement teams,” along with law enforcement, to assist those experiencing homelessness in the designated encampment by providing connection to services, including interim housing.
Last month, the Los Angeles Homeless Services Authority (LAHSA) released a report outlining the number of shelter beds available across the county.
The number of homeless shelter beds in the L.A. region has increased by over 50% in the past three years, however, demand still outpaces the capacity, according to the agency.
LAHSA found that the L.A. region’s shelter capacity on any given night was 24,616 beds — less than half of the estimated 66,000 people on the street countywide.
The previous Homeless Count was conducted before the pandemic, with many housing experts and community members reporting an increase in the unhoused population in the past 18 months.
L.A. Homeless Shelter Capacity Up 57% In Three Years, Still Less Than Demand
The number of homeless shelter beds in Los Angeles has increased by over 50% in the past three years, however, demand still outpaces the capacity.
The 2021 Housing Inventory Count and Shelter Count, released by the Los Angeles Homeless Services Authority (LAHSA) Wednesday, shows the nightly shelter capacity in the L.A. area has grown despite challenges faced by the pandemic.
LAHSA found that the L.A. region’s shelter capacity on any given night was 24,616 beds, a 57% increase over the last three years. The agency also reported 33,592 permanent housing options, an increase of 16% over the same period.
Through “unprecedented coordination” and a critical influx of state and federal emergency funding, the L.A. region’s rehousing system’s response to COVID-19 saved lives, according to Heidi Marston, executive director of LAHSA.
“We must build off of that momentum as we emerge from the pandemic to build the infrastructure necessary to address our homelessness crisis and collectively confront the conditions that continue to push people into homelessness,” Marston said in a statement.
The Los Angeles region needs to build a more balanced system with more housing options. A balanced rehousing system has five permanent housing exits for each shelter bed; the Los Angeles system is closer to one-to-one, according to the executive director.
The Housing Inventory Count is a census of all interim and permanent housing options in the homeless rehousing system at a given point-in-time. This year, the Housing Inventory Count occurred on Jan. 27.
LAHSA reported these results despite the global pandemic causing a considerable strain on its shelter supply.
In accordance with the Centers for Disease Control and Prevention (CDC) guidelines, all of Los Angeles County’s congregate shelters had to decrease their bed count through a process called decompression.
However, strategic investments by the federal, state, and local governments through Project Roomkey and Project Homekey helped make up for the loss of capacity, according to the agency.
The Shelter Count revealed that there were 17,225 people in a shelter on the night of the count, which is virtually unchanged from the previous year.
LAHSA cited that without the addition of 2,357 Project Roomkey beds and 497 Project Homekey beds, there could have been a more significant drop in the shelter count due to decompression.
Following the advice of public health officials, LAHSA did not conduct an Unsheltered Count in 2021 to protect the 8,000 volunteers needed to complete the Count each year from COVID-19. The agency is planning to resume the Unsheltered Count in 2022.
Home Prices In San Fernando Valley Reach New High, Median Nearing $1 Million
The median price of San Fernando Valley homes sold during June reached a record high while sales soared 56.9% and the number of properties listed for sale lingered at low levels.
The median price was $955,000, up 28.9% from June 2020, according to the Southland Regional Association of Realtors (SRAR).
June was the fourth consecutive month with the median above the $900,000 benchmark.
“Not long ago it would have been inconceivable that the San Fernando Valley would see the median home price inching toward $1 million,” said Diane Sydell, president of the association in a statement. “Now it seems inevitable, especially with today’s wealth of buyers, dearth of inventory, and heated competition over virtually every listing.”
The condominium median price for June was $519,000, up 12.8% from June 2020, but 3.9% below the record high $540,000 set this April.
A total of 554 single-family homes closed escrow during June, up 56.9% from a year ago and 11.5% ahead of May’s tally. It was the first month this year above 500 sales and the highest monthly total since June 2018.
The statistics for condominium sales were not as dramatic, in part because of the extremely limited supply of condominiums listed for sale, according to SRAR.
There were 725 active home and condominium listings at the end of June, the first month above 700 listings this year.
“The market has been overheated and buyer fatigue may be a factor going forward,” said Tim Johnson, the association’s chief executive officer. “Too many buyers are weary of competing with unseen competitors and losing to a higher bidder even when they come to the market fully prepared to buy. ”
That may translate in buyers being a bit more cautious, which when combined with the
reopening of the economy may yield a slowdown in sales and a few more listings.
Yet Johnson stressed that a “few more listings” doesn’t go far, even if some buyers are starting to take a bit longer to jump into the market.