Angie (Hancock) Mackey, formerly of Tarkio, Missouri, and her husband, Jake, are currently seeking help from friends, family, and their communities in paying for their son’s medical treatments. Four-year-old Joseph has Duchenne Muscular Dystrophy.
We all know that fighting medical battles can be very costly in this day and age, especially if that battle is a rare disease needing specialized care to treat. Kansas City, Missouri, residents Angie (Hancock) Mackey (a 2005 Tarkio High School graduate) and her husband, Jake, are currently asking friends, family and their communities for assistance in paying for medical care for their four-year-old son, Joseph. Joseph was diagnosed with Duchenne Muscular Dystrophy (DMD). DMD is a genetic disorder that causes progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin. With DMD, dystrophin does not continue to produce and over time, boys with DMD like Joseph will lose all muscle function and are likely to be in wheelchairs by the age of 10. The life expectancy of a DMD child is about 20 years old without treatment.
Jake is a firefighter for North Kansas City and United States Army veteran and Angie is the manager of Member Service for CommunityAmerica credit union in Kansas City. Currently, the family is running into hurdles and having to jump through hoops to get Joseph into a clinical trial and to get him lifesaving treatments he will need. Unfortunately, it hasn’t been going well so far. The Mackeys have decided to start a GoFundMe account for Joseph. Angie remarked, “Being a parent is hard no matter what. Adding in a terminal and devastating illness along with increased medical bills, medications, and needs is even harder and it is emotionally and physically exhausting for us all. Joseph is the most amazing, charismatic, sweet, silly, fun loving boy and we will do anything to give him the full life he deserves!”
The Mackeys were hopeful that Joseph would qualify for gene therapy, which was approved by the FDA. However, Joseph’s antibody levels are too high to receive the treatment; meaning his body would reject it and this could be life threatening. They then started the long screening process for Exxon 44 skipping, but they have learned that they can’t move forward at this time.
There are doctors who specialize in DMD across the U.S. that the Mackeys are desperately trying to connect with. With this, things like the cost of travel, continued medications and supplements, and paying out of pocket without a clinical trial as an option can quickly add up to over $100,000 or more. The cost alone for gene therapy is $3.2 million. Even with insurance, the out of pocket is unimaginable and not something an average family can afford.
The Mackeys are asking for your help to lessen the financial burden in fighting for their son’s life. Not having to stress over medical bills that have stacked up, and which will continue to stack up, would allow them more time to focus on a treatment option for Joseph. To learn how to help, visit Angie Mackey’s Facebook page or visit gofundme.com and type in the search bar Joseph’s Journey with Duchenne Muscular Dystrophy. Checks may also be sent to the family at 10824 N. Campbell Street, Kansas City, MO 64155. Every little bit makes a difference.
