September Spotlight: Duchenne Muscular Dystrophy Awareness

September is an important month for many families. It often marks the first day of school, the end of summer vacation and the first day of autumn. For our family, September also brings attention to a disease that many do not know about: Duchenne muscular dystrophy (DMD). September is Muscular Dystrophy Awareness Month, and September 7th is World Duchenne Awareness Day. Our son, Tucker, was diagnosed with DMD almost 10 years ago and we hope that sharing our family’s experience will help bring awareness to this devastating disease.

Tucker was born in February 2013, and he appeared to be perfectly healthy. However, by the time he was two years old, we noticed that he was struggling to meet developmental milestones and frequently fell over seemingly without reason. Although our pediatrician initially thought there was nothing for us to worry about, he referred us to specialists who ordered a blood test. Hours after Tucker’s blood was drawn, the doctor called to tell us that Tucker had DMD.

We were initially relieved to learn of Tucker’s diagnosis because we had a name and explanation for the symptoms he had been experiencing. However, our relief quickly turned to despair when we learned more about the condition.

DMD is a genetic disorder that usually affects males. Symptoms of the disease typically present between ages two and five and can include difficulty walking and moving, muscle weakness, leg pain, frequent falls and fatigue. People living with DMD can experience progressive muscle damage and weakness, which may lead to reliance on a wheelchair and the need for assistance with many daily tasks. Eventually, the heart and lungs can also be impacted, significantly shortening life expectancy. While several treatment options for DMD have recently been approved, there is no cure for the disorder.

Although Tucker is the only person in our family to have a diagnosis of DMD, the condition affects every member of our family. When Tucker was first diagnosed, we traveled to Cincinnati and Seattle to visit specialists who were familiar with DMD. By June 2015, it was clear that we would have to relocate from Columbia, South Carolina, to be closer to Tucker’s medical team in Seattle. Jamie left her job as a teacher so she could homeschool Tucker in between medical appointments and Jordan began working nights so that we could provide 24/7 care to all four of our children. About two years ago, Tucker’s condition had progressed, and he was quickly becoming less mobile. Many areas of our house were no longer accessible or safe for him. Once again, we packed our belongings, this time to move to Salem, Illinois, where our family members helped us build a handicap accessible house by hand.

As challenging as DMD has made Tucker’s life, he remains kind, thoughtful and courageous. He is excellent at finding the positives in any situation. When he needed to make biweekly trips to Atlanta for a year so he could participate in a clinical trial, he looked forward to visiting aquariums, riding to and from the airport in cool cars, and playing games on his iPad during his infusion treatments. He is now 11 years old, and like many children his age, some of his favorite memories are from our family’s recent trip to Orlando where we visited Disney World, Universal Studios, and swam with dolphins. He loves Harry Potter, learning about outer space, spending time with his siblings and playing video games. Tucker’s positivity and ability to cope with the difficulties thrown his way are inspirational.

Throughout Tucker’s journey, our family has done all we can to become more involved in the DMD community. We participate in walks hosted by the Muscular Dystrophy Association, raise awareness through social media campaigns, attend conferences and support fundraising efforts for DMD research. One of our most impactful contributions is sharing our story on our family blog, Team Sweet T. We hope that by sharing our story, we can increase public awareness of DMD and do our part to advance research for new treatment options for Tucker and all who live with this devastating disease.

To learn more about the Howe family, visit:

https://www.facebook.com/tuckersteam/