Jack Knight was born with a very rare case of Duchenne muscular dystrophy where he has permanently lost most of his motor functions at the age of 16.
Despite this, Jack became a real inspiration to many people as he never gave up and continued living his life the way he wants. He not only serves as an inspiration for kids with muscular dystrophy, he has also been an inspiration for kids at his school, who have even created their own theme song for him.
Jack’s journey with DMD
Jack Knight is a 16-year-old sophomore at Standley Lake School. When he was 14 years old, his condition took over his entire body and robbed his ability to move. He had to permanently be in an electric wheelchair and needed a service dog to guide him. For many years, Jack was a member of his school’s marching band as a player of the mellophone. When his disease rendered him immobile, it seemed that his passion had to be stopped since he couldn’t hold his mellophone and march with the band anymore.
However, Jack never gave up. Despite the restrictions, his disease put him through, he still went on ahead and continued being a part of the band. With a few modifications to the wheelchair and the help of his trusty service dog, Amber, he continued to do what he loved. In fact, he became such an inspiration to the whole team.
According to their band director Crissy Duran, Jack inspires everyone to work harder and love what they do.
The song dedicated to Jack’s undying fighting spirit
In dedication to Jack’s cheery outlook on life and inspirational spirit, his bandmates made a song in his honor. The idea was first thought of by his bandmate Adi Espinoza, who was really inspired by Jack. He convinced the rest of the students to compose Jack’s song.
They worked together with Chase The Music in order to create the song. Chase The Music is a non-profit organization based in Colorado, whose mission is to reach out to children who are suffering from chronic illnesses and conditions. Their goal is to help inspire these children and to show them that the world does care for them, like what they did for Jack.
The project was spearheaded by Dr. Garrett Hope who created the piece “Ataraxia.” Ataraxia is a Greek word of tranquility and is what symbolizes Jack’s struggle. Even if he is faced with adversity like his illness, he is still calm, tranquil, and happy. The song was made to have an inspirational and heroic feel. Dr. Hope wanted to showcase Jack as a hero to his bandmates through this song. It would serve as Jack’s very own theme song.
The song starts out strong with a brass chorale, which is followed by some scary music. This showcased the uncertainty in Jack’s life, which is why the middle part of the song was unsettling. The last part of the song featured calm and serene music that represented how Jack was able to stay calm despite the uncertainty in his future. The song was played during the spring concert of their school. It was a very inspiring song that touched the hearts of all the guests.
While the song was solely dedicated to Jack, the creation of the song goes deeper than just honoring Jack’s heroic struggle. It was also created to give hope to those who are suffering from the same condition as Jack. The song not only represents Jack’s tenacity in facing his condition but also represents a silver lining among all the adversity. The song reaches out to the many children who also have DMD and who think that there is no more life after the disease. It serves as a reminder that there is always hope no matter what the situation.
The hopeful cure to DMD
While Jack has been very optimistic about his life, his mother Angela Knight is still hopeful of a possible cure for her son’s deadly disease. Angela states that they have been giving Jack an experimental drug known as Translarna. Translarna, with the generic name Ataluren, is a special type of medicine used for curing genetic disorders of nonsense mutations. Angela recounts that the medicine is still in its clinical trial stage. Despite this, Angela shares that the medicine has been very helpful for her son. It was because of Translarna that Jack can still move his arms and play in the marching band. Angela also says that there have been no side effects over the course of taking the medication, so Translarna could be the symptomatic cure that they have been looking for.
Although Translarna has already been approved in Europe, the US Federal Drug Administration still hasn’t recognized it as safe yet. With this, the US FDA has been running tests on the drug before they approve it. The drug is still currently under scrutiny by the FDA and not yet approved for use. Angela’s concern with this delay in approving the drug is that boys with DMD need immediate treatment if there is one. Boys with DMD have low life expectancies, so they may die at any point in time. This is why the drug needs to be tested quickly so that it can be given to people such as Jack before anything serious happens.
Parent Project Muscular Dystrophy
In honor of Jack, the Parent Project Muscular Dystrophy made a fundraising page to help people with the same disease. The Parent Project Muscular Dystrophy is a non-profit organization that invests heavily in the research of DMD treatments. The organization was founded in 1994 and continues to improve the lives of boys who suffer from the illness. Jack has his own PPMD page to help raise funds for DMD patients.
Jack Knight serves as an inspiration not only to boys who currently suffer from the disease but also to others who are going through their own struggles. His bandmate Adi said, “He gives me so much inspiration. If Jack can do it, then why can’t we.” Jack shows all people that there are no limits. As long as one does not give up, then he or she can achieve anything. Jack’s song, even without words, already tells of his great story. His strong conviction, his uncertain future, and his calm demeanor— all can be heard in the beautiful song “Ataraxia”.