The story of little Brenna is a reminder of how a parent’s love is unconditional. As we all know by now, unfortunately, there are parents out there who would give up on their children just because they look different. That’s why it’s so important that we bring inspirational stories to peoples’ attention, stories where parents and children show that no challenge is too big, as long as you stick together. It’s also an important lesson to any of us who have ever judged anyone based on their appearance.
Courtney and Evan were happily living their life with their son Connor when they discovered that Courtney was pregnant again. Of course, the couple was thrilled when they realized 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. A few months into the pregnancy, Courtney and Evan found out that they were expecting a girl: Connor was going to have a little sister! The couple were overjoyed and began imagining everything that a little girl would bring to their family. “I’ll have to learn to braid hair now,” laughed dad Evan. The little girl was born – but all the couple’s plans of introducing the little girl to her new home were crushed.
Their daughter Brena was born 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. Courtney and Evan 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,” Courtney 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 Brenna, 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, Brenna 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. Her parents are convinced that their beautiful daughter can do whatever she wants in life, even though life hasn’t turned out exactly the way they planned. Courtney wrote regularly about her family’s life on her blog, Blessed by Brena, and she’s also written a book, A Different Beautiful. 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, Brenna has done a lot to raise awareness about the unusual disease.