Presley Jo

As many of you know, our sweet Presley was diagnosed with Congenital Melanocytic Nevus (CMN) at birth. This is a large birthmark that is located on her forehead into her scalp. 

CMN is rare and occurs in only 1% of the population. Of that 1%, only 1 in 20,000 children are born with a large nevus like Presley’s. We’ve done our research and are lucky to be working with Dr. Barry Zide, who specializes in reconstructive facial plastic surgery. Dr. Zide will use expanders for her large nevus removal, at NYU’s Lagone Health, which will ultimately reduce the risk of melanoma in her future. While we are excited for this surgery, we are also anxious, knowing that there will be many visits to the doctor, MRIs, follow-up appointments, and large medical bills in our future. We are currently taking Presley to CHOP for her routine MRIs in Pennsylvania because there aren’t any NJ-local hospitals who specialize in this specific treatment for children as young as our sweet girl. Of course, our insurance is limited to NJ-based doctors, which has already put us at a disadvantage with managing our expenses. Knowing that Presley’s surgery is going to be out-of-network as well has allowed us to estimate that this major procedure will cost us close to $50,000, AFTER insurance.

We’re expecting Presley’s first surgery to be when she’s just over a year old, around 14 months. We have to wait for her skull and skin to be further developed before expanders can be inserted. Once placed, they’ll stay for approximately 3-6 months. From there, she’ll have routine visits with the dermatologist to monitor the multiple satellite marks on her body and mris to make sure there’s no internal mole growth.

The saying, “it takes a village” couldn’t be more true than it is right now…we know that it would be financially impossible for us to move forward with Presley’s surgery and all of the follow-up care without the support of our village so we are asking for your help. We are asking for donations in any amount to help make this surgery possible for our little girl. All money will go toward Presley’s medical bills and any leftover funds will be donated back to Nevus Outreach which is focused on nevus research.

Thank you for your consideration and support! 

We hope to set up a formal foundation in the further that will benefit any other families going a similar situation.