Both parents, Evan and Courtney, were living with their son, Conor, when they learned that the mother was expecting another child. And yes, they were happy when they discovered that their family was going to expand. Like any other expectant parents, they were looking forward to their first ultrasound. Every time they left the hospital, the doctors assured them that everything looked great with their growing child. Several months into the pregnancy, the couple discovered that they were expecting a girl. The couple were overjoyed and began imagining everything that a little girl would bring to their family.
Unfortunately, when their baby daughter, Brena, was born, she was covered in thick white scales. She wasn’t moving, had an extremely high body temperature and her whole body was covered in sores. Brena needed intensive care immediately, otherwise, she wouldn’t survive. The parents were only able to hold their daughter for the first time two weeks after her birth. They found out that Brena had been born with a serious hereditary disease called Harlequin ichthyosis. The disease causes Brena’s body to make skin 10 times too fast. It causes redness all over her body and also affects her eyes, mouth, nose, and ears. The disease is untreatable and is often fatal.
With all the physical challenges that come with Harlekin ichthyosis, the parents knew they had a tough road ahead of them. Thankfully, she got professional treatment from the hospital. A team of physicians and caregivers managed to keep Brena alive through a united effort. As a result, she was released from the NICU 38 days after her birth. “Many babies with Brena’s condition die within hours or days of birth, and we have no doubt that the amazing care provided at the hospital is what kept her alive during that critical time,” the mom reportedly said. Courtney often comes across strangers who point, make loud comments or ask insensitive questions when she’s out with Brena. It makes her sad. She can understand that children are curious about Brena, since she has such a unique appearance.
But what really upsets Courtney is the reactions she gets from many parents. They pull their children away from Brena as soon as they see her and tell their children to keep quiet when they get close to her. Courtney would prefer that parents come up and talk to her and Brena, instead of looking away and leaving the playground. At the same time, Brena is a proud and confident little girl, who doesn’t let anyone bring her down. She’s confident in herself, thanks to all the support from her family. Especially from big brother Connor, who really worships his little sister. “Why do parents try to avoid talking to people who look different? What are they afraid of? They could just come up to me and ask how old Brena is,” Courtney says, and continues: “When their child asks why Brena is so red and swollen, why can’t they just be honest and say ‘I don’t know, but it doesn’t matter how we look. We’re all unique’?”
The brave and amazing mother wrote regularly about her family’s life on her blog, Blessed by Brenna, and she’s also written a book, A Different Beautiful. ”Brena’s disorder has impacted our family in every possible way. It truly affects us every day. But it does not define us, and it does not define her. It was extremely challenging and stressful when she was young, and we were learning to care for her needs. But it became second nature after a while, and it’s much easier today as she can communicate how she’s feeling and what she needs,” Courtney said. The family hopes that their open and emotional story can help others to understand and appreciate people who look different. During her time on earth, Brena has done a lot to raise awareness about the unusual disease. Today, this 10-year-old sunshine has proved that nothing is impossible.
