Blessings can come in all sizes. For the Forgione family, the blessing came in a tiny baby named Ivy.
The family, who lives in Fuquay-Varina, knew to expect some changes when Robin found out she was pregnant. Their boys were already older and leading active lives.
The Forgiones weren’t expecting to add to their family. But expecting they were, so it seemed fitting to delay finding out whether the baby would be a boy or girl.
The bigger surprise came when Ivy was born March 6, 2015, with a condition called Congenital Melanocytic Nevus.
The Forgiones could tell something was wrong by the darkened area that covered much of Ivy’s face around her eyes.
“We learned within an hour of Ivy’s birth that she had CMN,” said Robin, 44, who teaches fitness classes and is a therapist in private practice.
CMN is the acronym for the following: Congenital means it formed during embryonic development and was present at birth. Melanocytic means pigmented. Nevus means a mole, or Nevi for many moles.
Ivy was tested to determine the depth of the nevus and to see if it was cancerous.
“We felt incredibly lucky that there was nothing developmentally wrong,” Robin said.
It was important to the family that others could quickly understand that, despite the large darkened area on Ivy’s face, she was like another other baby with an adorable smile and a big heart.
Robin and her husband, Chris, began posting pictures of Ivy on their Facebook pages and created a special group, Ivy’s Incredible Journey, to share more of their experiences.
“Ivy has a very unique look and people who know her, see her for who she is,” said Chris, who has been the director of bands at Davis Drive Middle School for 18 years.
Robin also started a blog.
“The more we talk about things and share information, we get away from the stigma of not talking about our differences,” Robin said.
Ivy’s older brothers – 12-year-old Gabe, 9-year-old Jairus and 5-year-old Jade – are very protective of their little sister.
“Ivy has been such a blessing in bringing our family closer together,” Robin said.
The Forgiones have relied on their large network of Crosspointe Church friends and band parents for support and prayer.
After research and a lot of prayer, the Forgiones moved forward with the plan to have Ivy’s nevus removed.
“We had social and emotional validation to have it removed,” said Chris. “Middle school girls have a hard enough time with acne.”
The first steps involved putting in expanders under the skin on Ivy’s face. This would give Ivy additional facial skin to cover the area where the nevus would be removed.
As medical and travel expenses kept mounting to have Ivy treated by a doctor at NorthShore Hospital outside of Chicago, Robin created a CrowdRise page so friends could donate to help with expenses.
“We are a very frugal family, but a teacher’s salary and my part-time work wasn’t going to be enough to cover everything,” Robin said.
Support started coming in, and connections for additional help were made. A friend connected the family with Children’s Flight of Hope, which provides free air transportation for children with serious illness.
They met for the pre-surgery conversations in September and decided to move forward with a plan to have Ivy’s nevus removed. Everything went as planned for the first surgery.
The next surgery was planned for December. Robin felt flooded with tears as the questions lingered: how bad would the scarring be? Would her daughter start to look normal?
“I have tried to strengthen my faith through this process, diligently asking God to keep Ivy safe and to guide the surgeon’s hands,” Robin wrote in her blog.
Another surgery is planned soon to remove most of Ivy’s remaining nevus. The Forgiones will travel to Chicago this summer for the Nevus Outreach Conference.
East Cary Middle band director Chris Branam worked with other middle schools in the area to hold a concert fundraiser.
“Chris has been giving to our band community for over 20 years and is an outstanding role model, for not only his students but all of our community,” said Branam. “Combining the love of music, the unique bond of our band students and teaching service to others is how we decided to ‘Band Together for Ivy.’ ”
“Ivy’s journey is far from over, but the fact that in less than one year, the bulk of her nevus has been removed is nothing short of a miracle,” said Robin. “We could not have done this financially or emotionally without all of you and for that we are eternally grateful.”
Want to help?
▪ Band Together for Ivy is planned at Easy Cary Middle on March 11 at 7 p.m. The theme of “A Night at the Movies” includes music from “The Avengers,” “The Polar Express,” “Night at the Museum,” “Forrest Gump,” “The Lion King” and “Back to the Future.” Donations will be accepted at the door.
Students can register until March 2 to participate. Requested donation of $25. To register or learn more, go to www.eastcaryband.com.
▪ To learn more about Ivy, go to Robin’s blog at ivysincrediblejourney.weebly.com.