Clearing one of two major hurdles set before them, the family of Damian Markham, a Newhall 2-year-old battling a rare terminal disease, were told earlier this month that they would be given access to an experimental treatment needed in saving their son’s life.
In a post on her social media and in an interview with The Signal on Tuesday, Damian’s mother, Brittany Markham, said the family has been waiting months to enroll Damian in a non-FDA approved study for his acid sphingomyelinase, or ASMD — a disease described as “baby Alziehmer’s” that could kill him before his fifth birthday. The study aims to develop a treatment effective at keeping the degeneration of his body at bay.
However, a major hiccup in the plan was that the researchers running the experimental treatment were having trouble getting their hands on a key chemical owned by a pharmaceutical company, which is also the sole owner and creator of said chemical, Damian’s mother said.
For months, according to Markham, she has been attempting to get in contact with someone at the pharmaceutical company, using everything including phone calls, emails and family friends, to plead her case on possibly expediting their sending the keystone chemical.
In one carefully crafted email, the Markham family requested that the pharmaceutical company “simply send batches of the key ingredient they owned to (Children’s Hospital Los Angeles) so that Damian’s doctors could mix up the recipe for the same drug that was made for the little boy a few years ago,” Markham said.
And after months of failed attempts at making contact, while watching Damian become progressively worse and now having trouble sitting up or crawling, Brittany and her husband Brock received word on Halloween that the pharmaceutical company was willing to give its exclusive supply of the chemical to the cause of saving the 2-year-old.
“Although they stated there is a process for single-patient approvals for experimental drugs, they confirmed that they did have the ingredient we needed and that they have enough to support the study we wanted to pursue,” Markham said.
“I do not know how long it will take to get all the government approvals, but you can bet I will be doing everything possible to expedite the process,” said Markham. “I am so immensely grateful for the pharmaceutical company’s chief of staff, our doctors, the foundation, and everyone else who has also been showing a real sense of urgency.”
However, despite the major break, the new study will not be enough, Markham said, and they still had one other major obstacle in their way of saving Damian’s life and she was once again asking for her community’s help.
“It is expected that this drug will help, yes…but we don’t know yet how effective it is going to be,” said Markham. “There are already other small molecules being tested on rats that may prove to be an even more effective solution. And of course, there is a separate treatment method called gene replacement therapy that is being studied right now which is expected to be available in a few years – this timeline could be shortened dramatically with an extra $3 million in funding, which is our campaign goal.”
Markham said on Tuesday that Damian is unfortunately still getting weaker and as of a couple weeks ago lost the ability to army crawl even an inch. He’s also losing control and strength when he reaches for things.
“Our hope is that the small molecule study we’re progressing now will work well enough to at least pause the brain deterioration until we can develop a better solution,” said Markham. “So while getting Damian this first treatment, we simultaneously need to continue to raise awareness and funding for a true and total treatment of ASMD.”
For more information on how to assist the Markham family, or on how to keep up to date with Damian’s story, visit https://bit.ly/3DoiTUJ.