Spotlighting young writers with heartfelt stories that enlighten and inspire.

Soaring

A Story of Courage

by Suneel Ram

Suffering the debilitating effects of Duchenne Muscular Dystrophy, Suneel Ram finds the strength and determination to fight for the drug that could prolong his life and help others who are battling this rare disease.

“The day in Nova Scotia, I saw an American Bald Eagle soaring right above me . . . it was almost like he was trying to teach me something . . .”

Suneel Ram, born with the degenerative disease called Duchene Muscular Dystrophy, found the strength and inspiration he needed from that eagle. Suneel too longed to soar against the wind and show the world the strength hidden within his fragile body.

Suneel’s childhood and teen years were marred by broken bones and extreme muscle weakness. Confined to a motorized wheelchair, he was stuck on the sidelines as his peers ran and played. Even just writing was agony, and he relied on his aide to help him with just about everything. But the pain from his disease was nothing compared to the pain of loneliness. He longed to rise up from his wheelchair and tell the world about who he really was, beyond his disease. He needed to find his voice.

He got that chance in college. After a professor gave an inept description of DMD to the biology class, Suneel was determined to tell the class the truth about living with DMD. He composed a speech and courageously addressed the class. That day he spoke with strength and his audience was mesmerized. He had found his voice. Now he would take back his life.

A new drug that could offer Suneel that chance, had been approved, but he was denied admittance into the clinical trials. He was too old, according to the rules. And then the insurance company denied his coverage. Yet Suneel would not quit. He decided to write a letter himself, no matter how insurmountable that task seemed. Adversity simply strengthened his resolve. Like the eagle, he needed to fly against the wind in order to soar.

Publication Date: February 21, 2023
ISBN:
Hardcover: 9781947378339
Paperback: 9781947378346
eBook: 9781947378353

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Paperback: Amazon | Barnes & Noble | Books-A-Million | Bookshop | IndieBound | Indigo

HIGH 5

Five Parent Take-Aways About DMD

Duchenne Muscular Dystrophy (DMD) is a rare genetic disorder characterized by progressive muscle degeneration and weakness due to mutations in a protein called dystrophin. Dystrophin is essential for muscles to function. It acts like a shock absorber when muscles contract. Without dystrophin, muscles become damaged and weakened, and are replaced with fat and fibrous tissue. This progressive muscular weakness leads to loss of mobility, and eventually ability to breathe. It affects mostly boys, but girls can be carriers. It’s estimated at 1:3200 male births.

An infant with DMD may appear to be floppy, with poor muscle control of the head and neck. He will present delayed motor milestones, such as sitting up, crawling, standing, and walking. Other signs include using his hands to push on his legs to go from sitting to standing; a waddling gait; difficulty running, jumping, and climbing stairs; difficulty with motor skills; abnormal hypertrophy of calf muscles; and learning disabilities.

Although there is no cure yet, it’s important to see a neurologist who is well versed in DMD and begin the treatment, Deflazacort, as soon as the diagnosis is established. Find out the exact genetic mutation. Based on his mutation, your child may be able to start on new treatments to slow the disease, such as exon-skipping drugs. Connect with foundations, such as: Jett Foundation; Charley’s Fund; Cure Duchenne; and Parent Project Muscular Dystrophy for valuable information for daily living and for available clinical trials.

Make sure your child understands that he has to protect his muscles and bones. That is why he takes medications that will make him short and a little hairy. Classmates, peers, and family members also should be educated on the importance of this protection, and on the side effects of medications. Be honest and give examples of how DMD affects your child’s daily activities to help them foster empathy. Adapt activities so your child is not at risk. Most important, talk to school, family members, and peers about being inclusive and compassionate. Adapting is not excluding. Exclusion hurts and is lonely.

Find out the exact mutation of dystrophin gene. Ask your neurologist if your child can take any of the new exon-skipping drugs. Foster connections with DMD Foundations to stay up to date on treatment and options to ensure child receives best possible care.

ABOUT THE EXPERTS

Neera Gulati

Neera Gulati is Suneel Ram’s mother, family medicine physician, and Founder of nonprofit foundation Suneel’s Light, whose mission is increasing awareness of Duchenne Muscular Dystrophy and supporting medical research for effective treatments and cure.

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