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News :: Mangolds hope fund-raiser will help other families fighting rare nevus disease
· 8:06am February 12th, 2014
For many of us, having a baby is an exciting part of life that only adds joy and wonder to our day.
Four years ago, the Mangold family had the same experience along with another emotion: Concern.
A little boy entered their lives in the usual way, but came with a very unusual birthmark.
Reid was born with a giant congenital melanocytic nevus – a dark, pigmented birthmark that covered nearly half his body. It is so rare that none of his doctors had ever seen a child born with it. Nevus occurs once in 500,000 births.
This type of birthmark has no known cause and has no cure. Nevus occurs in both sexes and all races. It is not contagious and does not hurt. Nevi (plural for nevus) can occur on any part of the body. Reid’s nevus wrapped around his entire body, extending from his chest to his knees – in a common distribution called a ‘bathing trunk nevus.’
Those first few days were a blur for Reid's family, especially his parents, Jeff and Maggie. Fear and joy collided into a very raw emotion. Would he be okay? What would his future be? Other questions that most parents ask further down the road surfaced in those first days including, “How can I raise a confident child who looks so very different from anyone I’ve ever seen?” asked Maggie.
Within hours, the Mangolds were connected to an organization that became their life blood: Nevus Outreach.
Started in 1997 by a small group of parents, Nevus Outreach has grown into an organization that offers support to families and promotes research into the cause and treatment of congenital nevi.
“ I remember making a very tearful call to their toll-free number, and spending over an hour talking to Mark Beckwith, the founder of the organization. Within days I received heartfelt support from adults with nevi and parents of children affected by this condition," Maggie recalls.
This organization has provided Reid's family the information they have needed to get the right care for Reid by directing them to specialists with experience in this field, Maggie says.
"They have guided us on the more mundane concerns from how to deal with fragile or itchy skin to how to educate our children’s playmates. And through national conferences, we have been able to enjoy the companionship of others affected by nevi and learn from the scientists and doctors working in the field,” she said.
The last four years haven’t been without worry and troubles. Reid’s skin lacks sweat glands, which can lead to overheating. It is very thin due to an underdeveloped layer of fat under the skin, which leads to skin tears with only small injuries. People with nevi have an increased risk of melanoma, a potentially fatal type of skin cancer.
Pigment cells can also become deposited in the brain, a condition known as neurocutaneous melanocytosis. Maggie shared that Reid has three such spots in his brain. These spots caused Reid to have seizures as a baby. The seizures have since stopped, but may return. These spots are also at an increased risk of cancer.
Reid has had ten surgeries to remove portions of his nevus. But much more of his nevus will remain, including the spots in his brain. He gets new spots each week. Reid is growing into a spunky, curious little boy who is thriving through it all.
As a way of paying it forward (or is it giving back?) the Mangold family is holding a fund-raiser to help raise awareness of giant congenital melanocytic nevus and to raise money for Nevus Outreach. These funds support research to help find treatments and causes of this rare disorder and provide support to families such as theirs.
Reid doesn’t merely live with his spots; he lives with a song in his heart. He giggles his way through adversity – he lives life spot on. His spunky personality inspired the slogan on our shirts.
Reid’s family hopes you will take a moment to join them in reaching out to other families like theirs who need the help that the Nevus Outreach has provided the Mangold family.
The family has designed “Spot On” shirts that can be ordered here, as a way of raising money to help the organization as well as raise awareness of the condition.
All proceeds from the sales of these shirts will go to the Nevus Outreach organization to help others in need of the kind of help that Reid and his family have received.
If you would like to make a donation to Nevus Outreach, simply make your check out to Nevus Organization and send it to Maggie at 107 Scenic Drive, Vinton, IA 52349.
Maggie says the family's one hope for everyone is this: "Join Reid in living your life, Spot On!"
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