When Dylan Little was born four years ago, his doctors immediately admitted him into the Neonatal Intensive Care Unit (NICU).
According to his mom, Kara Little, Dylan was born with a rare condition called Giant Congenital Melanocytic Nevus (CMN). It was a surprise to both his parents and his doctors.
Congenital Melanocytic Nevus occurs when cells called nevomelanocytes are not evenly distributed throughout the body. When the cells become clumped together they result in moles on the skin, Nevus Outreach explains.
According to Nevus Outreach, small CMN is very common and occurs in one in every 50 to 100 people. Large CMN is less common and only occurs in one in every 20,000 people. Giant CMN, however, is extremely rare and occurs in only one in every 500,000 births.
Kara tells Independent Journal review that her sister was able to tell her what was wrong with Dylan before the doctors came back to her with a diagnosis:
“When Dylan was born, this was a complete surprise to everyone. Even the doctors.
Dylan was immediately taken to NICU because they were fearful that he had neurotic tissue and that he was going to die. I took a picture of him before they took him to NICU and immediately sent it to my sister, who was fresh out of Medical School. She was able to give me a diagnosis before they came back and told me.”
Of the few patients who are diagnosed with CMN, only 1% have it in their brains. Dylan falls into that 1%.
At birth, 80% of Dylan’s body was covered in moles. The largest mole started from the tops of his ears to the small of his back.
Both Dylan’s doctors and his parents feared his moles would manifest into skin cancer.
Kara tells Independent Journal Review that nevomelanocytes that have overpopulated under certain parts of the skin, such as with Dylan, often overgrow and turn into melanoma:
“By reducing those melanocytes it reduces the risk of cancer. Unfortunately, when these children get cancer it’s almost always stage 4 and fatal.”
The only way to prevent that from happening was for Dylan to undergo surgery to have his moles removed.
The affected skin would have to be replaced with “good skin” from other parts of his body. Yet, because Dylan had more affected skin than good skin, doctors had to come up with a way to stretch his good skin as much as possible, using saline implants as a solution.
Kara explains that the expanders are placed under Dylan’s good skin. For three months at a time, she fills them with saline at home until they get large enough for doctors to remove. Then the good skin is used on other parts of his body.
At just four years old, Dylan has had over 26 surgeries. As a result of his surgeries, over 50% of the affected areas have been removed, decreasing his chances of getting cancer.
Dylan’s parents have no idea what the future holds, but they are devoted to doing everything possible for Dylan.
Kara admitted to News.au.com, that not everyone is kind to their son, given his condition:
“Once in a supermarket a store manager asked us to leave because one of their customers was upset about having seen our child.”
Although the reaction was upsetting for Kara, she admits that she’ll never “hide” Dylan, because there is “nothing he should be ashamed of.”
All Kara wants is for her son to live a long, happy, baseball-filled life, and Dylan has no problem wearing a big smile on his face and being his energetic little self.
Kara tells Independent Journal Review that she is sharing her son’s story because she wants other people to feel compassion toward her son and others like him.
She also hopes that Dylan’s story will help those kids to not feel so alone.