Family to seek support at Tecumseh’s Appleumpkin Festival to help infant daughter battle rare skin condition

By CRISTINA TRAPANI-SCOTT

Madeleine Elizabeth Casteel’s family will be out in force during this weekend’s Appleumpkin Festival October 11 and 12 with the goal of raising funds that will go toward a surgery to help remove a giant nevus or mole that is covering a good portion of her back.

Born July 1 to Aaron and Mandy Casteel, Madeleine, or Maddie as her family calls her, has an extremely rare skin disorder call congenital pigmented nevus. Only about 1 in 400,000 children are born with the disorder. Aaron said it’s not genetic and there is no known cause for the disorder. While the nevus is technically a large mole, it presents several medical challenges, the most critical being the increased likelihood that Maddie could develop melanoma, a lethal form of skin cancer, at an early age if the nevus isn’t removed. The nevus tissue also is thinner than skin and can tear easily, causing bleeding and scabbing. It also can interrupt the sweat gland activity and cause the body to overheat.

Maddie’s nevus covers close to 40 percent of her back and has grown since her birth. She also has many smaller nevi or “satellite” nevi throughout her body. Aaron said that she is fortunate, however, that the nevi are on the surface as opposed to inside her body as in some cases.

Like many parents of newborns facing medical challenges, the Casteels sought as much information as they could. Aaron said that some of the information they found painted a bleak picture. Fortunately, the couple found Nevus Outreach, a support group for people born with nevi and their families that offered the most up-to-date information, reassuring Aaron and Mandy that Maddie’s condition could be treated safely.

It was through the group that they were connected with Dr. Bruce Bauer, head of the division of plastic surgery at Children’s Memorial Hospital in Chicago. He specializes in tissue expanding surgery that treats giant nevus and is renowned for his expertise with giant nevus removal. “That’s why we went with this doctor,” said Aaron. “He has so much experience.”

The surgery, which could cost anywhere from $14,000 to $20,000, will not only remove the nevus but will greatly reduce Maddie’s chances of developing melanoma. Insurance won’t cover the cost of the surgery, which involves using tissue expanders to stretch the skin to where the nevus can be removed with relatively little scarring. Aaron said that, while the surgery is quite involved, it is the most effective way to treat a giant nevus and be sure it won’t return. Maddie won’t have her surgery until January when she’s six months old, or old enough to begin the series of surgeries.

The Casteels want her to have the surgery while she’s young. “Being so young, we want to get this done so that she has no memory of it,” said Aaron. Even with the removal, the Casteels will have to limit Maddie’s exposure to the sun.

Having the Nevus Outreach group has helped the family find the information needed to get Maddie the best medical care possible and has connected the Casteels with other families who have experienced the similar issues associated with the skin disorder and treatments. Aaron said they have already met a family in Kalamazoo who has a young son who had a nevus removed through the same surgery planned for Maddie. “It was really reassuring to meet a family who had been through the procedure and to see the pictures of before and see the little boy now,” he said.

The Casteels also are planning to maintain a connection with Nevus Outreach and attend a national conference, so Maddie will be able to meet other children who have gone through what she will. “Ultimately, we know we are doing the best thing we can. That’s why we want the best treatment for her,” said Aaron.

For further information on congenital pigmented nevus and Maddie’s story, and to make a donation, visit Maddie’s web site at www.helpmaddie.org, or visit the family’s booth at the Appleumpkin Festival, Saturday and Sunday, Oct. 11 and 12.