Ryan Catherine Hodnett entered this world on March 20, 2002.  After an easy pregnancy and delivery, Ryan joined us in typical Ryan fashion, quietly and without much fuss.  I remember the doctor calmly commenting that she had a birthmark and she was quickly taken away to be cleaned up.  I thought it was strange for the doctor to say she had a birthmark, but when I saw Ry she was all wrapped up and I did not realize the extent of what the doctor meant.  A few hours later, I got to see that Ryan had a birthmark covering half of her torso and several birthmarks elsewhere on her body.  No one knew what Ryan had or had seen anything like it before. The next afternoon, a specialist was brought in to see Ryan.  Luckily, my cousin Wendy was visiting and kept me company.  After an hour, the doctor sent a nurse in to tell me he was just taking pictures and measuring her and that she was ok and would be in as soon as he was finished.  After what was literally hours the doctor came in and told us that Ryan had a Giant Congenital Nevus and all that it meant.  He told me that while he knew what Ryan had, he was not specialized enough to follow her long-term, but he would be her doctor until then.  At 7 days old, Ryan had her first biopsy.  It definitely was so hard sitting there holding my tiny baby’s hand as it happened. The next year was filled with lots of doctors appointments and tests until we were lucky enough to find what would become her team: the wonderful doctors at Sloane Kettering and her amazing surgeon in Chicago.  We learned that Ryan was lucky not have some of the most serious complications (Neurocutaneous Melanosis) and all of her biopsies were clear. The chances of having a Giant Congenial Nevus like Ryan’s is 1 in 500,000.  We were also told that due to the size and location of her nevus, the chances of her developing melanoma was 1 in 4 by the time she turned 5 if we didn’t proceed with surgery. At 18 months, we decided to embark on her journey back and forth to Chicago to remove as much as we could of her nevus. Ryan had 4 rounds of surgery (9 in total) to expand her skin to grow new healthy skin to replace her Nevus by the time she turned 4.  As Ryan grew, she did develop some neurological complications but in typical Ryan style, she did not let it stop her from anything.  Over the past few years Ryan has added a few surgeries to continue the removal process and to address some residual issues from her Nevus.  So far, Ryan has had 12 reconstructive surgeries and will need at least 1 more.

We are beyond lucky to have had an amazing support system through Nevus Outreach throughout all of this.  Back when Ryan was born, the internet was not what it is now and Nevus Outreach (via snail mail) was our first lifeline to figure out our next steps.   We are beyond grateful for all they provide to families. Last year we took part in the Anthony is On the Move Fundraiser for Nevus Outreach and it was a wonderful experience. Last year they raised $22,000.00, $10,000.00 of which went to the team at Sloane Kettering for research. This year we are excited to participate and help fundraise for an amazing cause!!  Please join us if you can at Cooper River Park on September 15th for the Certified 5K/ 1 mile fun run if you can.  If you can’t make the race, please donate to support research and awareness!!

Thank you!