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.”
Brady is now two and a half and his spirit continues to keep him smiling and laughing each day. He loves hummus, tomato basil soup, and anything that involves his older brother Leo and black lab, Clementine. He works diligently with physical and occupational therapy three days a week. Perhaps most profoundly, Brady is learning to stand and hopefully soon walk on his tender, fragile, and often still wounded feet.
“Our family keeps high hopes that Brady will be able to do most of the things that ‘normal’ children can do,” said Eileen, “EBRP is working diligently to fund the research and clinical trials needed to improve Brady’s quality of life and give him the chance to just ‘be a kid.’ Treatment would mean Brady could walk and possibly even run! We will not give up and we are grateful for all who believe that together we will heal EB.”
On Oct 21, 2018 Caruso Family Charities awarded $10,000 to EB Research Partnership in Brady’s name in the hopes of finding a cure for this terrible disease.