Jennifer Hiles American woman suffering from arteriovenous malformation Country: USA

1. Jennifer Hiles: Living with a Rare Medical Condition
2. The Struggles of Living with AVM
3. Finding Love and Building a Family
4. Hope for a Brighter Future

Jennifer Hiles: Living with a Rare Medical Condition

Jennifer Hiles, an American woman, has been living with a life-threatening medical condition called arteriovenous malformation (AVM). AVM is a condition characterized by abnormally tangled blood vessels that spread underneath the skin like tree branches. This disease causes severe bleeding and heart failure, and Jennifer has narrowly escaped death on seven occasions. Despite enduring numerous unsuccessful surgeries to remove the vascular nodules from her face, Jennifer remains hopeful that the upcoming operation will finally be successful. Doctors plan to remove all the blood vessel nodules from her face, as well as reconstruct her nose using her own jawbone. However, before the final surgery, Jennifer must endure the discomfort of having inflatable balloons placed under her skin to stretch it, in order to hide the excess skin scars on her face. She hopes that after the operation, people will no longer insult her, and she can begin to live a normal life with her husband and two daughters, Marlena and Kaia.

The Struggles of Living with AVM

Jennifer's journey with AVM began at birth when her parents believed that the birthmark on her face was a simple mark that would fade with time. However, her condition only worsened over the years. Her mother, Alfreda Sims, recalls the numerous blood transfusions Jennifer required and the unsuccessful attempts to cauterize her veins and vessels. But the most terrifying aspect for Alfreda was watching her daughter go through such pain. The diagnosis of AVM came when Jennifer was twelve years old, and since then, she has undergone several unsuccessful surgeries to remove the nodules from her face. Her family struggled with the bullying and teasing that Jennifer endured, but the constant fear of losing their daughter was even more devastating. Alfreda shares, "There were times when I was afraid to go to sleep because her nose would bleed. She wouldn't cry, but in the morning, I would find her crib covered in blood. She almost died when she was eleven years old, losing a ton of blood through her nose. It was the scariest day of my life."

Finding Love and Building a Family

Jennifer's life changed when she met her future husband, Dustin VanOverschelde, in a biology class. Jennifer shares, "He didn't care what people would think of us being together, and that was the most amazing feeling in the world." Dustin comments, "I don't care about her appearance because I see her inner beauty. It's a mystery how she will look after the surgery, but it won't affect my feelings for her. She is beautiful no matter what." Despite the negative reactions Jennifer faces due to her condition, she cherishes every moment with her two young daughters, Marlena and Kaia. Jennifer picks up Marlena from school every day, encountering the negative stares and comments from people. Some children even scream as if they have encountered a real monster. Jennifer admits, "They ask whose mother I am. I didn't embrace or kiss Marlena when she came out of school because I didn't want people to know that I am her mother. I was scared that people would make fun of her because of me."

Hope for a Brighter Future

Jennifer's ultimate dream is to stop worrying about bleeding and the negative reactions from people when she picks up her children from school. She longs for the day when her condition will be behind her, and she can finally enjoy a normal family life. However, she struggles to believe that day will come. AVM is a rare medical condition that involves abnormal connections between arteries, veins, and smaller blood vessels. With AVM, blood from the arteries directly enters the veins, depriving organs of oxygen. Over time, this leads to tissue pain and thinning, and AVM progresses as blood flow increases. This places additional strain on the heart, which has to cope with the extra volume of blood. According to Great Ormond Street Hospital, AVM occurs in approximately 1.4 people per 100,000.