Caruso Family Charities Makes a Rare Gift

When Eileen Attar was pregnant with her second child in 2016, she felt that this one was different. “After a healthy pregnancy, my husband Chris and I welcomed Brady into the world. Moments after he arrived, we noticed something was terribly wrong: Brady’s feet were raw and missing skin. After two weeks in the NICU and a heartbreaking diagnosis of RDEB, we brought Brady home.”

Epidermolysis Bullosa is a group of life-threatening genetic disorders that affect the body’s largest organ: the skin. Individuals with EB lack critical proteins that bind the skin’s two layers together. Without these proteins, the skin tears apart, blisters, and shears off leading to severe pain, disfigurement and wounds that may never heal.

“We were overwhelmed,” said Chris, “Not just by the daily tasks required to keep him safe, but by the effort it took to get there resources we needed. Home health agencies had rarely cared for a person with EB, and the fact that Brady was an infant made them even more hesitant. Our private insurance company would not cover wound care supplies that cost upwards of $8,000 a month. These bandages would be Brady’s only form of treatment and without them, he would not survive. We realized quickly that we weren’t the only people who hadn’t heard of EB, but it’s rarity also meant that our path forward would require constant education, and through that, it would hopefully lead us to properly and exceptionally care for Brady.​”

At this year’s Cafe Jordano event, Caruso Family Charities awarded $10,000 to EB Research Partnership in Brady Attar’s name in the hopes of finding a cure for this life-threatening skin disease.

Read more about Brady Attar and see the video.

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