Darby and Brady’s Story
I remember getting the phone call from the geneticist telling me that my son had Cystic Fibrosis like it was yesterday. One in every 41 Caucasians is a carrier of the CF gene. So, there was a 1 in 842 chance that Brady’s dad and I carried the gene.
I wasn’t upset. I didn’t cry. In my heart, I already knew he had CF.
When it was confirmed, I knew my son was meant to have this disease. I sure didn’t know why, but I knew it was happening.
Brady also did not develop like other children, but I was not worried. I cherished all the milestones and never took anything for granted. Brady would have been 14 years old on October 17, 2022, but had the overall development of a 2-year-old.
But that didn’t stop him from finding things he loved.
Brady loved the water, and didn’t discriminate against any source be it bath, sink, rain, or even toilet. And he LOVED straws…a magician could only dream about the way he could make them mysteriously twirl.
I learned about Edmarc in March 2022 when Brady entered Palliative Care at CHKD. I had heard about the program from another Edmarc family who had been receiving services for several years. When the nurse and social worker came for the first visit, I knew it was the right thing for Brady. They set me at ease by always telling me everything would be okay.
The greatest gift they gave us both was the ability to let him just be and to help him stay comfortable.
The Edmarc Picnic provided some of my favorite last memories of my son. We had an amazing time together, eating, laughing, and playing in the grass; and all we had to do was show up and enjoy our son.
Edmarc came to our home for 5 months before Brady passed. The nurses and social workers always treated me, my husband, and Brady with love, compassion, empathy, and dignity. Without Edmarc, we couldn’t have spent Brady’s last days at home and for that, we will be forever grateful.
In March 2023, I accepted a position with Edmarc as the Director of Finance & Administration. I have a background in Human Services and Finance so when I saw the job description, I knew it was a perfect way to use my talents to give back. All families should be able to receive the care we received through Edmarc, and I have the honor of working in the background to ensure more families receive our services. Working for Edmarc and helping with the expansion into the Williamsburg area means I am part of helping other families like mine.
Darby, Brady’s Mom
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