For Shannon, a loving momma and avid blogger, the lyrics posted on her blog page, For Waverly. For Oliver. For a cure., are words she couldn’t wish truer:

I want to trip inside your head and spend the day there… to hear the things you haven’t said and see what you might see. I want to see your thoughts take shape and walk right out. The songs are in your eyes. I see them in your smile. —U2

Shannon’s children, Waverly (11) and Oliver (8), were diagnosed with MPS IIIA/Sanfilippo Syndrome, a recessive autosomal genetic disease. Unfortunately, children with this disease typically only live to be 10-16 years old. Quite frequently, Shannon blogs about her children—children who once appeared vibrant and healthy, but, over time, have lost their ability to communicate, their independence and mobility, and are completely dependent on their parents.

So imagine the discouragement Shannon’s family faced when they found out their first born, Waverly, not only suffered from Sanfilippo for many years, but also had dystonia. Once thought to be seizures—convulsing, contorting, crying—the dystonia suspicion was later confirmed. Dystonia is often mistaken for seizures at first because both diseases share a number of similar symptoms.

Shannon called the dystonia diagnosis a “horrible beast.”

However, she feels fortunate that her daughter is already on a medicine that should help with the symptoms.

During the past several years (since her children were diagnosed), Shannon has been taking each new challenge as it comes— looking at it as “a new phase.”

Her heart hurts knowing that as days, weeks, and months continue to pass, the once bright, bubbly, enthusiastic siblings, continue to fade. Their bodies here, but their souls drifting elsewhere.

But despite the difficulties, Shannon keeps their spirits alive through photographs, stories, and updates on her blog.

This is what persistence looks like. A mother who will not give up on her kids no matter the odds.

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