Born with a deformed face—no ears, misaligned eyes, and an unusually wide mouth—little Loui (from England) has caused his parents immense pain.

Gazing into her son’s blue eyes, Karly Herriott waited for a smile in return before gently kissing his cheek. “My sweet boy!” she whispered to her 19-month-old son, stroking his blond hair.

For Karly Herriott, she no longer notices Loui’s misaligned eyes, deformed face, misshapen ears, or unusually small teeth. The 28-year-old mother only sees boundless happiness radiating from her son’s intelligence, loveliness, and humor.

Like other children, Loui enjoys playing with toys and learning to ride a tricycle… but for Karly, she knows the road ahead for her son and her family is a great battle—a battle to restore a new face for her 19-month-old boy.

Loui was born with severe facial deformities caused by a rare genetic condition called Treacher Collins syndrome. Sharing her experience during pregnancy and childbirth, the mother said that after two weeks past her due date, she and her husband were overjoyed to welcome their son into the world at the Royal Sussex Hospital near their home in Brighton. The delivery was quite quick; after only 27 minutes on the delivery table and three pushes, baby Loui was born.

“Right after he was born, he cried very loudly and I said, ‘That’s his cry!’ Then I tried to look at his face but I noticed something was wrong. I asked the midwife but they didn’t have time to answer and pressed the alarm button. Immediately, other doctors and nurses rushed over. While the doctor was cutting the umbilical cord, I clearly saw his face and couldn’t imagine what had happened. Although I still hadn’t received any answers, they took him to the intensive care unit because Loui stopped breathing,” Karly recounted.

Baby Loui was then given oxygen, but Karly and Luke couldn’t see him until the following evening. “It was terrifying. I only got to see him for a moment. We didn’t have any pictures of him and were only told by the doctor that he had Treacher Collins syndrome. I remember hearing the name of this syndrome in a documentary on television some year ago.”

A few days later, the couple were finally allowed to visit their son and were completely shocked when they finally saw Loui. He had a large hole in his face – where an ear should have formed, but there was no ear. The bones in his eye sockets hadn’t developed, causing his eyes to be misaligned, his cheekbones were small, and his thick hair pulled down to his cheeks. “I was so scared when I saw him; he didn’t look like I had imagined. I wasn’t warned at all.”

During the pregnancy, wanting a surprise, Karly and Luke didn’t have a 4D ultrasound to clearly see their baby’s morphology and gender, only regular prenatal checkups. This made the shock even greater when they welcomed their baby.

Because of Treacher Collins syndrome, Loui’s jaw and throat were very narrow, causing him serious respiratory problems and requiring a tube to be inserted into his throat. At 3 weeks after birth, Loui even had tracheal surgery to insert a tube, making breathing easier. In addition, Loui has undergone numerous other surgeries, including nasal and gastric tubes because he cannot eat, and a hearing aid because he lacks external ears.

Currently, the boy is 19 months old and, after many surgeries, is in stable health. However, the road ahead is fraught with difficulties as his parents want surgery to restore his face.

Karly and Luke have set up an online fundraising campaign to raise money for Loui’s upcoming surgery, which will cost approximately $50,000. To date, the fund has raised $38,000, and they hope to soon have enough money to restore their little son’s face.