Brock and Brittney Markham need your help.
The Santa Clarita, California family — by way of Banks and Arlington, Washington — are fighting for their 2-year-old son's life, and despite a daunting disease and prognosis, the couple are determined to do everything within their means to save Damian, along with every other child born with ASMD (acid sphingomyelinase deficiency), also known as Niemann-Pick disease, Type A.
"If I just accepted this prognosis, I'd always wonder if my son could've survived," Brittany Markham said. "For me, saving my son is obviously my driving force, but this could potentially be a game-changer for hundreds if not thousands of babies who are ever diagnosed with this. I have to try."
ASMD is a condition in which the body can't make enough of an enzyme caused acid sphingomyelinase. That can lead to organ damage as a chemical called sphingomyelin, which the enzyme normally breaks down, builds up in the brain, liver, lungs and spleen.
More information about the condition can be found at asmdfacts.com.
There are three types of ASMD. Damian Markham has Type A, which is the most severe and rapid progressing form of the disease, and one that typically leaves children with a life expectancy of 2 to 5 years of age.
Treatments are limited, but forms do exist.
One treatment involves modifying an existing drug that's presently being used to treat post-traumatic stress disorder. Another is gene replacement therapy, which would replace the malfunctioning gene that causes ASMD and replace it with a working one.
An effective genetic treatment for ASMD Type A is still four or five years away, Brittany Markham predicts, but she believes that with more funding for medical research, that timespan could be cut in half.
The Markhams hope that with money for treatments, along with sponsored drug research and production, Damian and others' lives can be prolonged and ultimately saved. That's where you come in.
The Markhams are asking people to contribute to the cause through a GoFundMe page, with a goal to raise $500,000, that they have set up in Damian's name.
The family has partnered with the Wylder Nation Foundation — an organization founded by the Laffoon family a decade ago after their son died of ASMD — in an effort to fast-track the foundation's research and initiate a clinical trial.
Brittany Markham said she's heard from doctors that it can take as much as $1 billion over two decades to develop a treatment for a disease like ASMD, but researchers are now at the "tail end" of that timeline.
"They know exactly what gene is causing the problem, and they know what's going to fix the problem, but with this being such a rare disease and so few people being affected, you have to convince these pharmaceutical companies to do this," Markham said. "That's why we need public awareness, to put pressure on the pharmaceutical companies to do something that's not necessarily going to make their stocks go up, but it will save lives."
Brittany Markham said she's heard from people allover the world regarding Damian's plight, primarily from families who've lost their child to AMSD. In a way, she feels like she's fighting for their child as well, which is why she wanted to be clear that the money they're seeking for research and treatment isn't just for Damian, but for every other child who has been or may be diagnosed with the disease going forward.
"Developing and funding a treatment would save every baby's life, potentially," she said. "I've gotten messages from women in Iran, Portugal, Germany, Italy, the UK — and they're all in the same boat. In a lot of cases, their child has already died, but I'm still fighting in their honor."
And how could she not after knowing what they've all been through?
"The thought of Damian being gone is the scariest thought in the world," Brittany Markham said. "This is a hard road. I'm working full-time, this campaign is full-time and Damian is a full-time job, but I have to do this. I'm not going to stop until this is done."
If you'd like to donate to the cause, you can do so at savedamian.com.
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