Meet Luke, our first Warrior and our inspiration for launching the Warrior Collective. His story continues to inspire us to do what we can for all the other warriors out there living with a rare disease.
Luke has a rare genetic condition called Gaucher’s Disease (pronounced “go-shay”), a disease so rare that it affects only 6,000 people in the US. And one of those 6,000 is our Warrior Luke.
Luke, and others living with this rare disease, are missing an enzyme that helps break down lipids or fatty substances that build up in cells as the body functions. Over time, these cells get overloaded and sent to the liver and spleen as the body tries to clear them out. These cells collect in the liver and spleen, causing the organs to grow in size and stop working effectively. Additionally, the bone marrow cells are affected, reducing the body’s ability to make new healthy blood cells. This leads to microcytic anemia and low platelet counts.
This causes a lot of health problems such as chronic anemia, fatigue, easy bruising, bleeding issues, bone disease, and pain. If gone untreated, the condition can be severely compromising and even fatal. Thankfully, Luke was able to get a Type 1 Gaucher’s Disease diagnosis when he was only 18 months old.
Just two weeks after his diagnosis Luke started enzyme replacement therapy (ERT) or what he called “superhero medicine”. Getting started on ERT involved surgery to place a medical port in his chest for his infusions. His veins were too tiny and hard to access - a port made it easier to get an IV in place to deliver the “superhero medicine” containing the missing enzyme. That was February of 2016. Since then, over 350 infusions have kept Luke growing strong. He struggles with chronic pain and fatigue every day, but he is strong, fast, smart, capable and thriving.
Luke, and others living with this rare disease, are missing an enzyme that helps break down lipids or fatty substances that build up in cells as the body functions. Over time, these cells get overloaded and sent to the liver and spleen as the body tries to clear them out. These cells collect in the liver and spleen, causing the organs to grow in size and stop working effectively. Additionally, the bone marrow cells are affected, reducing the body’s ability to make new healthy blood cells. This leads to microcytic anemia and low platelet counts.
This causes a lot of health problems such as chronic anemia, fatigue, easy bruising, bleeding issues, bone disease, and pain. If gone untreated, the condition can be severely compromising and even fatal. Thankfully, Luke was able to get a Type 1 Gaucher’s Disease diagnosis when he was only 18 months old.
Just two weeks after his diagnosis Luke started enzyme replacement therapy (ERT) or what he called “superhero medicine”. Getting started on ERT involved surgery to place a medical port in his chest for his infusions. His veins were too tiny and hard to access - a port made it easier to get an IV in place to deliver the “superhero medicine” containing the missing enzyme. That was February of 2016. Since then, over 350 infusions have kept Luke growing strong. He struggles with chronic pain and fatigue every day, but he is strong, fast, smart, capable and thriving.
You heard it right: ERT isn’t a one-time treatment. For the rest of Luke’s life, he will need this weekly infusion. And this weekly infusion costs $300,000 a year.
Discovering that your kid has a rare and serious medical condition — and the insane costs associated with that — was a major shock for us. But this isn’t an anomaly among those living with rare diseases. It’s incredibly common to see six-figure price tags for rare disease treatment. When there are fewer people with a disease, this means it’s not as profitable for companies to develop the therapy. There is little profit to be made - so why spend the time and resources to make these drugs?
But behind the “profit” is a real human being whose life depends on this drug. And you have no choice but to do whatever you can to pay the bills and make it happen. For our family, even with the health insurance we’re so thankful to have, we still paid over $30,000/year in medical expenses out of pocket. We have learned how to apply for co-pay assistance, drug assistance and how to leap through insurance loopholes so thankfully, that number is lower. And we continue to fight to get the same treatment and medication approved and covered through our health insurance, even though Luke’s diagnosis never changes. Get this: About 6-8 hours a week is spent on managing Luke’s Gaucher’s Disease and the associated appointments, phone calls, medication management and paperwork. It’s… a lot.
But this story isn’t just about Luke, it’s about all the families out there living with a rare disease.
The National Institutes of Health estimates that about 1 in 10 people in the U.S. live with one of over 7,000 known rare diseases. Those 25-30 million people are facing what feels like insurmountable obstacles associated with their rare disease. It’s not just costly medical bills. It’s the sacrifices you make each and every day to give your loved ones a full and happy life.
Canceling your gym membership, never taking a vacation, not being able to afford your kid’s sports or art lessons, or struggling with your basic needs like a full night’s rest. Our family has been through all of this.
Through our own rare disease treatment journey as a family, we’ve realized there’s a gap that needs filling and that’s where The Warrior Collective comes in. To fill those needs outside of medical treatment that isn’t always covered by other financial or assistance programs. The haircut, the art therapy, the retreat, the respite care that makes all the difference for those living with rare diseases and their families. It’s these extras that make life fun, that restore you, that give you a sense of peace and joy.
So, thank you Luke for helping us see the power behind a collective community, and thank YOU for being part of this mission.
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