Now we are ten: Javad’s story

This story first appeared in the Information Point newsletter Our World in 2011, the year the Information Point celebrated it’s tenth birthday.  To mark the occasion, we asked some parents with children also celebrating their tenth birthday the same year, to reflect on the challenges and achievements of their first ten years. Javad’s mum Shannon continues the story below. 

When Javad was born, November 1, 2001, he was small, weak, and barely breathing. He was a much-anticipated child, the sibling that would unite our blended family. Weighing 6 lb 7 oz, he seemed like he should be healthy, but we quickly realized he was not.

Within 18 hours, he was transferred to a local children’s hospital where he could receive care in the Neonatal Intensive Care Unit. He remained in the NICU for three weeks, undiagnosed, until his release the day before Thanksgiving. Looking back, I believe that they sent him home to die, although they never said those words to us.


The next two years are a blur. We spent more time in the hospital than out. He received a diagnosis of myasthenia gravis at 5 months, a shot in the dark. At almost two, we saw a doctor who challenged this diagnosis, so a muscle biopsy followed, then we received the diagnosis of myotubular myopathy, which according to all we read, seemed to potentially be fatal. We were crushed but vowed to give Javad the best life possible. At three and a half another major setback with a near fatal respiratory event which resulted in a tracheotomy.

Fast forward six years and you will find Javad a healthy, happy boy attending school and making friends. It is hard to believe those years so long ago when he was so tiny and frail, especially looking at him in his strength.

He warms your heart with his smile and continues to amaze us with his determination and strength. We look forward to many, healthy, happy years ahead, which is why we don’t think of Javad as nine years old, but rather nine years strong!

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