Fear, Frustration, Hope, Acceptance: 4 Struggles of a CVID Diagnosis

Kathy Antilla recalls the moment she heard her son, Issac, say those words she thought she’d never hear:

“Mom! Look at me! I’m just like a normal kid now.”

In an episode of Mystery Diagnosis, a medical mystery show on the Discovery Channel, Issac’s family recalls the harrowing six-year journey from his birth to his diagnosis with Common Variable Immune Deficiency (CVID).

Many parents of children with CVID can relate to the four emotional states of finding a diagnosis for this rare disease.

1. Fear

Dan, Issac’s father, remembers the constant infections and his fear that they would prevent his son from living a long life. Would they find the answer in time?

Dan, Issac's father, speaks about son's CVID
Dan, Issac’s father, describes the initial scared reaction he felt when his son was dealing with the initial CVID diagnosis. Source: Youtube

2. Frustration

Doctor after doctor didn’t know the answer to Issac’s symptoms. Instead, in their ignorance, they questioned Issac’s parents’ behavior. “One doctor,” Kathy remembers, “wrote ‘Issac wouldn’t be vomiting so much if mother didn’t make such a big deal out it.'”

3. Hope

No matter how jaded one gets, each new doctor, test, procedure, and treatment always brings at least a flicker of hope that maybe, just maybe, this time it will finally help.

4. Acceptance

A rare disease brings with it many new and strange things: education, treatment, emotions.

Most importantly, it brings a new reality that everyone in the family has to accept. While doctors visits and treatments are still part of the norm, a diagnosis brings positive new realities, too.

For Issac’s parents, it brought validation that had been right the whole time. Something was wrong with their son. Of course, many parents can relate to Kathy’s sentiment:

CVID patient Issac's mother
Issac’s mother, Kathy, faced the normal response that any mother would feel when a doctor doesn’t know what’s wrong with their child. Sheer frustration. But relief and acceptance was finally attainable with her son’s diagnosis of CVID. Source: Youtube

For Issac’s siblings, it brought a brother who actually had the energy to play with them.

And for Issac, it brought a treatment that made him, at the age of 6, feel like a normal kid for the very first time.

Watch Issac’s full story covered by the Discovery Channel below.

If you or someone you love has had to gone through these 4 frustrations of grief, share this article with them to let them know they are not alone and hope is always there.

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