The Markham family started a GoFundMe page to raise funds to save their son Damian’s life from acid sphingomyelinase deficiency on May 17, 2021. On Feb. 28, the family hit a significant mark on their fundraising journey – raising $1 million.
ASMD is a rare progressive genetic disorder that can cause an enlarged liver and spleen, loss of muscle tone, failure to thrive and rapid neurodegeneration that can lead to death by 3 years of age.
Brittany Markham, Damian’s mother, set out this year with a goal to reach the $1 million mark for “Please Save Damian” on Feb. 28, Rare Disease Day.
“I think it’s just trying to keep the momentum of the campaign going is just an ongoing effort,” said Brittany. “Feb. 28 being Rare Disease Day, it was just such a good motivator for people and so there was a lot of excitement around it and, and we were thinking like, ‘This day it’s actually going to happen.’”
All of the proceeds from the GoFundMe page go to the Wylder Nation Foundation, a nonprofit organization that has been funding research for ASMD. Funds will help fast-track the research and treatments.
The $3 million overall goal is set up to be divided to raise funds for three treatments that would contribute to Damian’s survival – one FDA-approved drug, a brain treatment and a treatment currently in the animal testing phase.
Prior to the GoFundMe and when Damian was diagnosed, Brittany knew nothing about the disease. She took to the internet, digging for any information about what she could do and the resources available for her family.
The Markham family even traveled to New York to visit an experienced doctor with ASMD. It was that doctor who informed them of the Wylder Nation Foundation.
“From that point, I decided I want it to be not just to help raise money and get our story out there and to raise awareness for this disease,” said Brittany, “but help, it’s been very humbling and very fulfilling, to kind of create a community.”
On Feb. 28, Brittany was eagerly watching the donations on the GoFundMe come in. She was refreshing her browser, posting updates on the Facebook and Instagram page @pleasesavedamian and waiting for the number to reach $1 million.
At 8:57 p.m. Brittany saw a future of possibility come true as the amount raised read $1 million.
“We felt like there was a huge party going on, because I was getting so many messages and, and we went live on Instagram right afterwards, and a bunch of people jumped on and celebrated with us,” said Brittany. “It just felt like a huge party.”
Damian, 4 years old, currently goes to the hospital every other week to do infusions that affect the majority of his areas affected from ASMD, except his brain. In the last three months of doing the treatments, his liver enzymes have drastically come down and are nearing a normal level.
“It’s been very, very encouraging,” said Brittany.
Damian is scheduled for an ultrasound in April that will determine if his liver and spleen, which are over 10 times the size they should be, have decreased.