Last week, local resident Damian Markham, who was diagnosed with “baby Alzheimers” last year, is finally looking forward after receiving permission from the FDA to start an experimental treatment for the potentially fatal disease. 

In March, 2021, the Markham family finally discovered why Damian had been having so much difficulty reaching his milestones, even regressing and losing new skills. That was the first time they heard that Damian had Acid Sphingomyelinase Deficiency (ASMD).

Photo Courtesy of Save Damian

Niemann Pick Disease

ASMD, also known as Niemann-Pick Disease Types A & B (NPA & NPB), is a genetic condition that causes enlargement of the liver, lungs, spleen, blood and the digestive system, according to Markham.

Damian suffers from Type A ASMD, the most severe form of the disease that causes loss of muscle mass, as well as rapid neurodegeneration that is linked to premature death before the age of five, according to the GoFundMe.

“Up until he was 18 months (old), we thought he was totally normal, a little delayed in his development but he’s an only child so it’s not uncommon to be a little behind in the milestones, and with COVID there was not much socialization,” said Brittany Markham, Damian’s mother.

Damian’s regression began slowly. At first, his mother noticed him getting tired early, then he stopped trying to stand up, then he stopped cruising, then stopped being able to sit up on his own due to lack of balance. 

“He would sneeze so hard it would cause him to fall over, it was really cute but… I mean, we just watched his skills drop one by one,” Markham said. 

Damian’s language skills also began slipping away as his physical abilities deteriorated. In January 2022, he lost the final word in his vocabulary – “Dad.”

Today, only a few weeks away from his 3rd birthday, Damian possesses the developmental abilities of a 3 to 4 month old. He no longer speaks recognizable words, and has stopped waving, his “signature move” to interact with others.

All the while, Damian’s parents have been forced to watch helplessly as their son slowly lost the very same skills that they had delightly documented only a few short months before. 

“He’s still the same Damian, it’s like he’s living his life all over again in reverse, he’s losing his skills in the same order that he gained them,” Markham said. “But he’s the same Damian, he knows who I am still.”

FDA Approves Experimental Treatment

“You all know how long we have been trying to get this treatment approved!,” Markham said in an update on her blog. “The FDA received the original application for this treatment in February and the standard response time for an emergency use application for patients with critical need is just a few DAYS “For reasons I don’t need to get into here, the FDA responded exactly a month later, and rather than sending us an approval, they put our case on a “full clinical hold,” which in the regulatory world is DOOM “I am so so so grateful for the immediate action taken by members of Damian’s team to put together every bit of information the FDA claimed they needed to change their assessment. Even still, I had to make a handful of unorthodox phone calls myself so I could ensure that everyone involved knew that Damian was REAL and he was TRULY in need of URGENT and expedited attention.”

Damian had his first round of experimental treatment on April 22, and the new chapter in the Markham’s lives is a sign of hope for the whole family. 

“It’s amazing to feel like we’re actually making progress now, over the past few months we were starting to feel pretty beaten down, trying wear down the FDA,” Markham said. “It’s been a long time, it feels like a really big win for us to be able to be doing something. He’s had no treatment and we’ve just had to watch him decline and regress.”

The drug approved just for little Damian is a powder substance that is mixed into a spoonful of yogurt.

Research at the Wylder Nation Foundation uncovered a small molecule that passes through the blood-brain barrier that has displayed hopeful results at potentially slowing or stopping the rapid course of neurodegeneration. 

“We have raised about $800,000, and our average donation is $15,” Markham said. “Every little bit counts and the drug we’ve got Damian on as a part of a study and research team which is being funded by all the people who donated.

The family hopes to meet their fundraising goal of $3 million by June of 2022. As of Wednesday, April 27, the combined efforts of Damian’s family and the thousands of people who supported them have raised around $800,000.

“The support from the Santa Clarita community has been incredible and so many people have reached out to help us… it has totally changed my life,” Markham said. “Before I did that I considered myself a bit of a hermit, but being a mom demanded I needed to ask for help. It’s been mind blowing and lifechanging to see how good people are.”

To help aid Damian’s potentially life-saving treatment, his family is suggesting several avenues to get the Santa Clarita community involved:

1. Donate to the family’s GoFundMe
2. Share on all social media with the hashtag #SaveDamian
3. Share the family’s GoFundMe and these steps to all contacts
4. Leverage any avenue to make this campaign go viral

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