Patient Story: Parental Support on DMD Journey

Our parents can be some of our strongest supporters, and Hawken Miller knows this firsthand. He recently published an article in Muscular Dystrophy News Today detailing the love and support they give him. He has Duchenne muscular dystrophy (DMD), and his parents have done absolutely everything they can to give him the best life they could – his mother runs a non-profit while his father has carried him across the globe to ensure he never misses out.

Hawken’s Story: Endless Support

While parents are meant to be there to support and love their children, some go above and beyond. Hawken’s parents are the perfect example. Having a child with a disease like DMD means being uncertain of the future, as outcomes vary widely. This comes with grief and pain, but Hawken’s parents worked through these emotions in order to give their son the best life they could.

His parents did absolutely everything in their power to make their son happy. They made sure that he never felt incapable of anything, whether that was education, activities, or jobs. With their help, Hawkin was able to participate in the activities of his peers. As he grew older, the responsibility to find a workaround for certain situations fell onto him.

While things like sports were not an option, his parents always made sure he was engaged and enjoying himself. He joined and excelled in the Boy Scouts, and with his father by his side, he was able to join the top 2% of the group and become an Eagle Scout. His mother enrolled him in technology camps, competitive book clubs, and screenwriting classes. He was constantly learning and bettering himself, always with the support of his parents.

Beyond endless support, they also made sure to help in other ways. For example, his mother was always helping him stretch, preparing meals, and getting him ready for school, which are daily acts of love and support. In addition, she ran a non-profit that aimed to find a cure for DMD at the same time.

Hawkin describes his father as his “arms and legs.” He’s carried his son through Point Mugu State Park, over the Great Wall of China, through the Iguazú Falls, and through the caves of Hạ Long Bay. To make sure that his son never missed out on anything, he would put the child on his shoulders and make the treks himself. When he could no longer do that, he was always there to give support in other ways, like life advice.

Of course, they did the mildly annoying but done-out-of-love things that parents are known for too. They were always there to make sure Hawkins ate his vegetables, did his homework, and got enough rest. Overall, they were strong pillars of support in his life, and he knows he wouldn’t have been able to do it without them.

Many parents of children with rare diseases go above and beyond for their children and can relate to Hawkin and his parents’ story. Acting as a caregiver and a parent is impressive, and we can’t forget to give them our support as well.

About DMD

Duchenne muscular dystrophy (DMD), is one of nine forms of muscular dystrophy. A mutation passed down in an X-linked recessive pattern stops patients from producing dystrophin, ultimately resulting in progressive muscle weakness and degeneration. Other symptoms include difficulty with motor skills, fatigue, learning disabilities, frequent falls, issues with moving positions, and difficulty walking. Complications may include heart disease and respiratory failure, making treatment integral. The main form of treatment is steroids, but there is ongoing research looking into new options for DMD. Other current options include amino acids, asthma treatment, physical and occupational therapy, heart medications, assisted breathing, carnitine, creatine, and other supplements.

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