How A Mom Is Fighting For Her Son & Inspires Others Who Have a Progressive Rare Muscle Disease – Interview

How A Mom Is Fighting For Her Son & Inspires Others Who Have a Progressive Rare Muscle Disease – Interview

Like most moms, Laura McLinn had plans for her son’s future, hoping to help him fulfill his dreams. But when Jordan was almost four years old, he was diagnosed with Duchenne muscular dystrophy, a progressive disease that causes muscles to slowly waste away.

The diagnosis was a complete shock to his family, but his mom quickly realized that this was their journey, and they were going to make every day the best day ever going forward.

And that’s exactly what they’ve done. After researching potential treatment options Jordan and his family decided to enroll him into a clinical trial for a new treatment for patients with Duchenne muscular dystrophy. The family had so much hope that this could help their son.

Now, Jordan and his family

are celebrating the success he’s had in the clinical trial for the treatment which was received Accelerated Approval by the FDA for Duchenne patients who have a specific mutation like Jordan.

His mom says it’s been incredible to watch all the positive changes he’s been experiencing, during the four years since he’s been receiving the treatment. Jordan who is now 12-years old, says he tries to make every day the best day ever.

Jordan is one of an estimated 10,000 boys in the U.S. with this rare disease. Early signs of Duchenne include delayed ability to sit, stand or walk. Patients face increasing loss of mobility and by adolescence, many require the use of a wheelchair.

In teenage years patients begin experiencing problems with heart and lung function that leads to serious, life-threatening complications.

Join me in a recent interview with Jordan’s mom,

Laura McLinn, as she shared Jordan’s journey and how she and her family approach every day and never gave up hope. She also discussed how she has become an advocate for helping others with Duchenne muscular dystrophy and offers advice to other parents about options available that can help.

For more information, go to Duchenne Diaries

BIO:

Laura McLinn Bio

Laura McLinn is a mother of three children, a wife, a former mathematics teacher, business owner, rare disease advocate, and founding president of the Best Day Ever Foundation.

Laura started her career as a public-school math teacher. After twelve years of teaching, she got married, started her family, and also started her own business, Indy Learning Center, providing math tutoring, Spanish classes, and educational childcare to young children.

When her own son, Jordan, was diagnosed with Duchenne, a rare and fatal form of muscular dystrophy, Laura started advocating for him and others with rare diseases. Laura founded the Best Day Ever Foundation to help support other families who have children with life-threatening illnesses.

She is passionate about helping families. She provides workshops to educate families on a wide range of topics including individualized education programs, homeschooling, navigating clinical trials, and more. Laura is currently homeschooling Jordan, and she is also his full-time caregiver.

*Photos courtesy of Laura McLinn

*Info and interview courtesy of NS Pharma 

Cynthia Tait

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