Brave Little Luna: A Journey of Hope and Resilience in the Face of a Rare Skin Condition

She was only eight months old when her parents decided to make the 6,000-mile trip in order to help their daughter.

Little Luna Tavares Fenner traveled to Russia in 2019 after her parents agreed to a pioneering surgery, but problems with her visa have meant she has had to return home to the United States weeks before her final operation.

She has a rare skin condition that leaves part of her face covered in dark pigments. The mark on her face is medically known as giant congenital melanocytic nevus (CGNM), a type of skin disorder, and she had been receiving treatment in the city of Krasnodar in the Russian federal subject of Krasnodar Krai. The condition affects only 1.5% of the world’s population and puts those affected at higher risk of developing cancerous melanoma. It took doctors six days to diagnose Luna’s condition after she was born in March 2019.

Carol said: “I was in complete shock. When Luna was born, no one in the room knew what the condition was. My last ultrasound before giving birth had revealed nothing abnormal. I have also received a lot of encouragement and people telling me that Luna is beautiful. When people say she looks like the superhero Batɱaп or a butterfly, that makes me happy. Luna is very well. There are ɱaпy new discoveries… trying to walk, dance, copying everything I do…”.

Two years ago, a Russian surgeon contacted his parents to say he could help. But disappointment came when their visa expired and they were forced to return to the United States.

They were forced to postpone the last operation and return home. They now face an agonizing wait to find out when they can return so the girl can have her final surgery.

The girls’ mother, Carol, announced that they had to return home with a post on her Instagram page.

She said: “We had three days to buy the ticket and return home because our visa expired yesterday. I thought we could finish all the surgeries, but no. Now it’s ᴛι̇ɱe to wait for permission from the Russian consulate to return soon. The doctors stated that there is complexity since Luna’s nevus has grown on her eyebrows and will have to be removed.” However, they stated that the difficulties are temporary and that Luna will return for final procedures.

Luna was born in South Florida in the United States, with a congenital melanocytic nevus, which is a rare type of skin disorder. Her condition left a dark birthmark on her face, which has led to her being nicknamed the ‘Batɱaп’ girl.

Carol had previously been informed by doctors in America that removing the mark would require a series of around 100 high-risk laser operations.

However, after Luna’s story made headlines around the world, her parents were contacted by a Russian surgeon who offered to perform a pioneering treatment using dynamic photo laser therapy. It is heartwarming to see medical professionals stepping up to offer their expertise and help those in need. However, it is important to note that any medical treatment must be thoroughly researched and discussed with qualified health professionals to ensure its safety and effectiveness.

 

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