Duchenne Muscular Dystrophy: Real Stories
Top Real Stories
1. Positive attitude
I had always admired the lady who stood last when picking up her child from school. Not because her son had DMD, but because of her cheerfulness and calm. She was never in a hurry, unlike other women, and always waited until her turn. One day, while it was time for the school bell to go, I approached her. To my surprise, she immediately opened up (I have been thinking of her as an introvert). I did not want to talk about the illness of her son, and she read me right. She talked as if I had been one of her close accomplices, and did not hesitate in sharing her emotions. But never once there was a mention of frustration and agony, which comes inevitably in any challenging situation. I was amazed at her view of life, her behavior as a fighter (not lamenting the situation which has come naturally).
2. Iron determination
If you happen to pick a T-shirt at madhousetees.com, think about its designer. Jared Aronson, an artist since childhood days, has transformed his love for art into T-shirt designs. His art is whimsical, and points to the taboo in society and everyday life. Jared is restricted to a wheelchair, but that does not restrict his imagination from attempting far-reaching consequences. He makes his art with the help of his thumb movements. His health has been deteriorating with time, and he is bound to a ventilator each hour of the day. Although DMD has restricted him physically, it could not limit his thoughts. His parents and nurses are a constant companion round the clock. DMD has given varied dimensions to Jared’s tools of artwork. Earlier, he used pens and pencils, and then the computer mouse. But now he has just his thumb to rely on. The fact that a design can take even 20 hours to materialize has not restricted him from giving marvelous and witty ideas to the world. He has a high school diploma, despite challenging situations.
3. A champion
My visit to a friend’s house gave a new meaning to life, which is usually taken for granted. She, being a children’s nurse, was never short of patients. But this one was different. A six year old cute little champ (having DMD) was coping really well. The routine injections, blood tests, bone and heart scans and muscle biopsy were dealt with bravely. Besides his daily medication, physiotherapy is done twice a day, focusing mainly on his leg muscles. He also wears night splints in bed. All this gets him really tired and he often has to struggle to get things right. When he cannot run as fast as his friends, he gets frustrated. But the support and confidence from people around (including friends) works as a booster dose for him. His school teacher has been kind enough to give him regular visits, and he loves narrating to his teacher about his learning.
4. Setting an example
The news of Thomas having DMD at about age 2 was certainly not welcome by his parents. A premature born child, Thomas’ lungs were not fully functional and his life in this world was not an easy start. But even then he pulled through. Thomas’ diagnosis of DMD was done relatively quickly. His doctors are keen to observe him grow with the challenging condition. Family members are very supportive and optimistic; they find and implement the simplest tools which can help Thomas. They have been actively searching for more and more information about DMD. Even though the family gets to know discouraging things (they preferably do not want to accept), it does not discourage them from finding a helpful source. Thomas’ family takes it as a challenge and does not visualize him as a patient. He is a fighter, and an adorable son to his parents. The positive outlook helps the family cope up with the situation bravely.
5. Ray of hope
Today, I came to know about a molecular scalpel which is potentially a new tool in combating duchenne muscular dystrophy (DMD). This gives me hope that something good is on its way and shall reach me soon. This new research sees hope in the short, yet functional dystrophin, which came as a result of the research. This scalpel could possibly change severe symptoms and turn them to mild forms, which can reduce the pain of DMD sufferers. There has been constant work to arrive at a treatment for DMD since 50 years. This news certainly is a ray of hope for the struggle against this challenging situation.