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One Mom Shares Her Story of Living with PI and Finding IDF

IDF community member, Betsy Abramson, wrote and presented this speech for IDF Walk for Primary Immunodeficiency – Cleveland.

“A woman, her husband and child are walking down the street. They stumble and fall into a deep, dark hole. The woman yells for help. A very kind doctor walks by, sees them in the hole, stops to gives some simple instructions and a prescription, and then keeps walking. A family walks by the hole and calls down to tell them not to worry, that the hole won’t get any bigger.

Just when the woman really hopes that the hole will swallow her up, a friend looks into the hole and jumps in. The woman asks the friend, 'Why did you jump in the hole?' The friend answers, 'I have been in this hole before, and I know how to get out.'

In a nutshell, that is what the Immune Deficiency Foundation (IDF) has meant to me and my family. They were/are that friend that brought us out of the hole.

As a mom, your job is to put on a brave face for your child, even when you don’t feel so brave. In the midst of Sofia’s diagnosis of Common Variable Immune Deficiency (CVID), somewhere in the fog, IDF appeared; and to be honest, I am not really even sure how, or when.

First, it was with a parent connection to answer questions, then someone to help with medical concerns, and then another person to introduce us to IGGY and Zee Zee. Then there were the friends that made infusions much more bearable for my child.

With each step, things started to become a little more bearable. Suddenly I was past the point of my daily meltdown, and the mother bear in me reappeared. When we had issues with Sofia’s school (which thankfully were minor compared to many other stories that I have heard), IDF was there once again to help with creating a 504 plan.

I can say, without a doubt, that the Immune Deficiency Foundation was instrumental in leading us to become advocates for primary immunodeficiency diseases (PI). IDF allows you to have that moment where you cannot see straight, and then they guide you right back on track. Having a child with an invisible illness is uniquely complicated. People often look at you as a parent who is over-involved, looking for issues and are sometimes just paranoid. However, as that parent, it is critical that we are aware of our children’s needs at all times because health needs can change moment by moment.

IDF was there from when I felt completely lost as a parent in the beginning, throughout all of our adjustments, and even now when I find myself advocating for CVID, and PI pretty much all of the time.

We are no longer alone. The voices on the other end of the phone are truly a part of our extended family. We live in complicated times. The daily news media reports are unnerving, especially when we are listening to people decide what is best for our healthcare. For me, it is reassuring that IDF is a constant presence. They are our voice, and they are also there to educate us and often calm our fears. They have helped us grow into a family with a child who has CVID, not a CVID child.

I have to add that the impact of IDF has been generational in our family. My father is 80-years-old and is retiring this month from his job. He is already working as a liaison for IDF with local allergy immunologists in the area. We are here from Buffalo, NY. This is our third year walking with friends of ours who moved to Ohio several years ago. We will continue to support IDF as they support us. Because of their support and guidance, I am no longer the woman in the hole, rather, I am an advocate for my child and a support for others in need.”

Do you want to share your story of living with PI? Whether you do it by photo, video, or written article, sharing your story is crucial to the promotion and awareness of PI. Contact IDF: info@primaryimmuneorg or call 800-296-4433.

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