Around the same time that they would be celebrating Damian Markham’s second Christmas, Newhall resident Brittany Markham and her husband, Brock, started to notice that they were growing increasingly less able to contribute to conversations with groups of new parents.
Those young families could continually bring up new milestones about their child, such as their son or daughter being able to now scoot or speak a few words. But Brittany Markham started to notice that her son Damian, who turned 2 Monday, had not only slowed in his development, but had, at least in her view, regressed.
In March of this year, following four months of visiting doctors and submitting Damian to test after test, the Markhams would receive their answer as to why their child was falling behind, confirming their worst fears.
The youngest Markham was diagnosed with Niemann Pick Disease, which requires such a specific set of genes from both parents, that only five to 10 cases are active in the United States at any given time.
And now, the parents say, they are in a race against the clock to save their child’s life.
Niemann Pick, formally known as Acid Sphingomyelinase Deficiency, is an early-onset disease categorized into three types: Type A, B and C, with Type A being the most severe of the three. The Type A form of the disease contributes to a child suffering from an enlarged liver and spleen, loss of muscle tone, failure to thrive and rapid neurodegeneration that typically leads to death by age 3.
According to Damian’s mother, her son has a mild form of Type A, and therefore a greater chance of surviving longer than the stereotypical worst case of Niemann Pick. But what separates Type A from the other types is the brain deterioration — if a cure or more effective treatment is not found, the continued neurological damage to him will likely result in his death before the age of 5.
“It’s almost like a baby Alzheimer’s, where the brain is, in fact, degenerating,” said Brock. “There are treatments for a Type C, and for Type B a bit, because those (treatments) help the enzyme and the internal organs to function properly.
“But they don’t help the brain, which is what he has,” Brock added.
For the past few months, the Markhams, who work in the entertainment industry, have spent much of their time at home taking care of their son. Damian is unable to speak and now struggles to sit upright, and at his most recent evaluation doctors said his development had regressed to a stage younger than a 1-year-old.
“His favorite thing to do is if you give him a book and we just read him books, he’ll sit and read with us as long as we’ll read to him,” said Brock.
“But it’s weird to see videos of my nieces and nephews that are almost exactly his age … and they’re just running around, climbing up things, going down slides, talking,” said Brittany. “They can (converse in) sentences and finish sentences, and Damian, at his year-and-a-half evaluation … they put him at like a 6- to 7-month-old.”
Despite the often grim outlook given to them by doctors, the Markham family says they are holding out hope for a cure or treatment to extend and/or improve Damian’s life.
Over the past few months, the two parents, alongside the family and friends, have laid to plans for two specific goals they would like to accomplish: one, gain the funding needed to develop the necessary treatments, and two, spread awareness about the disease.
“There’s a treatment in development that’s like four or five years out, but with a surge in funding, they could potentially cut that time in half,” said Brittany. “Which would probably save Damian’s life.”
She added that there is an already developed drug that, if given some small adaptations, would be able to help stymy the neurodegeneration enough to “buy us some time while the gene therapy is being wrapped up.”
In terms of awareness, the family has teamed up with the Wylder Nation Foundation, a nonprofit whose mission is to accelerate the discovery and development of treatment options for children suffering from Niemann Pick Disease.
“(Researchers) only need like $3-4 million,” said Brittany, saying that money would go to the remaining lab time, staff and research needed to get the treatment to clinical trials. “We’re at this point where if the science is there and they just need the manpower, that’s something that money can fix.
“As his mom … I have to do everything that I can to save his life,” she added. “If there’s a sliver of hope that if I put all this work, effort into it, and Brock, too, obviously … if there’s something that can be done to save his life, I’m going to do it.”
For more information on how to assist the Markham family, visit their GoFundMe page at https://www.gofundme.com/f/please-save-damian.