Last May, we started chronicling the story of Marian McGlocklin, who then at just 19-month’s, was diagnosed with a fatal genetic disorder called Niemann-Pick disease type C (NPC).
Over time, NPC children slowly lose the ability to move, eat, speak or even breathe.
Most diagnosed with NPC are not expected to live past their teenage years and the life expectancy of those diagnosed with it is younger than 20.
But good news: Marian is “walking around now, able to climb up on things and is getting so much stronger every day,” her mom, Sara, tells Kindness and Hope.
Sara alongside her husband, Paul, have been actively raising funds so that this brave little girl can get access to the treatment she needs — and attempt to defy the odds in terms of recovery and life expectancy.
“Marian is doing really well, it’s like someone helped shine a light on her,” Sara explains. “She’s also understanding a lot more language and is almost caught up there. The developmental delays are still there but she’s starting to close the gap in many of the areas, our hearts are still hopeful that she will be able to catch up with the help of the experimental treatments until a cure is found. ”
Despite her progress, there are heartbreaking days, however, for the family.
“We also know that right now, as it stands today, there isn’t enough science for her to survive NPC,” Sara says. “Which is a heartbreaking reality to face, especially when we see her doing so well. We are dedicated and committed to doing all we can to help her and others with NPC survive. Scientists are urgently working on a cure or advancing treatments, and every day that we can go faster and every dollar that we can raise for a cure is going to make a difference in helping to save Marian or another child fighting NPC.”
Sara and Paul have no intention of giving up and are determined to continue to raise funding for research for Marian and for other children diagnosed with the fatal disease.
Sara explains how others can help: “Right now we have two campaigns going: the first is The No Pucker Challenge – taking a bite of a lemon, videoing it, and challenging friends who either keep it going or donate $10; and Riding for Marian – a nurse in Florida who is cycling across the state stopping at hospitals, taking the No Pucker Challenge along the way, and working hard to raise awareness and a cure for NPC from Nov 1 to 4 – www.hopeformarian.org/ridingformarian.org, all donations from both events are going straight to research to advance research for a cure.”
Every dollar counts — and helps take a closer step towards finding a cure, ensuring children with NPC have a chance at life.
Get updates on Marian’s progress HERE.