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Adorable, sweet Dylan VanHorn was born May 24, 2012 with a very rare condition called Giant Congenitial Melanocytic Nevus. This essentially means that Dylan was born with large moles or birth marks all over his body. It occurs in just 1 out of 500,000 births. This condition forms in the womb within the first 12 weeks of pregnancy, with no method of prevention. Wherever Dylan has a mole, it also means that the skin in that area is much thinner than normal. This causes him to be much more susceptible to infection. For Dylan, this means that in his short life, he has been treated four different times for MRSA bacterial infections. He now has chronic MRSA but it is under control with daily antibiotics.
The nevus skin tears easy and his parents have to put Aquafor on it at least 30-70 times a day so that his skin doesn't itch or tear. They also have to fly Dylan from Georgia to all his appointments in Ohio because if he sits in a car for too long, his nevus skin will bleed. While the spots on Dylan’s skin don’t hurt per say, they are itchy, which is a constant annoyance for him. At 21 months Dylan doesn't sleep through the night because of the itching… and nothing has helped that.
Dylan has moles over 80 percent of his body, with the largest covering a significant portion of his back. The most dangerous aspect of the condition is the cancer risk that comes along with it. The large nevus on Dylan’s back is at higher risk of cancer, and because the skin is much thinner in that area, if he does get cancer there is a high risk of it quickly moving into his organs since the skin doesn’t have as much protective barrier as it should. To reduce the risk of cancer and to protect Dylan from infection, a long series of surgeries are scheduled to remove these giant moles. They hope to complete all of the surgeries (20+ total) before Dylan is five years old. While they will not remove all of his moles, his parents are hopeful that the surgeries will have a great impact on the rest of his life medically and socially. When doctors remove part of a nevus during surgery, they have to replace it with new skin. They then use something called an “expander” to help that new skin stretch and grow. To do this, they inject liquid into the expander, which essentially forces the skin to stretch and forms a huge bubble under his skin. This helps Dylan get the new skin he needs in order for them to continue removing parts of the nevus.
Dylan’s next surgery is scheduled for March 4th, 2014. The doctors will place another expander in his chest under his neck, allowing the "good" skin to grow/expand his so that the doctors can use it to go over his shoulders. Think of the good skin like a balloon, when they take the expander out they flatten the balloon and cut all the "bad" skin out that it covers. This will be Dylan’s 9th surgery and he will have this expander in for at least 3 months.
Dylan also has Neurocutaneous Melanocytosis (NCM) People with large nevi can have melanocytes (nevus cells) in their central nervous systems (their brains and/or spinal cords). These cells produce melanin. Melanin does not particularly belong in your brain, and it can cause complications when present. Because of this Dylan has seizures, but thankfully they are controlled with medication.
Aside from his condition, Dylan is your typical happy almost 2 year old kid. He has two older brothers who dote on him and parents who love him dearly. There is a long road ahead for Dylan and you can follow him at Dylan's Amazing Journey on Facebook.
Dylan’s parents need to raise fund for his upcoming surgery trip and medical expenses not covered under their insurance. They also plan on attending the 2014 Nevus Outreach Conference in Texas this July. Dylan and his parents will have access the top doctors and experts from around the world and learn about the latest research and advancements in treatment options. Thank you for your contribution!
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