Brooklyn's Birthday Fundraiser

Nevus Outreach / 2025 A-Team

Celebrate Brooklyn's Birthday with a purpose. Join us in raising funds for Nevus Outreach to support individuals living with CMN, NCM, and related conditions and their families. Together, we can make a difference. 

  • $3,068

    Raised

  • $2,500

    Goal

  • 30

    Supporters

  • 3

    Days Remaining

Recent Transactions

About Brooklyn's Birthday Fundraiser

For Brooklyn's first birthday, we are hosting a fundraiser to celebrate her, share more of her story, and raise funds for Nevus Outreach - an organization that has connected us with families across the country and helps fund research for Brooklyn’s very rare conditions.

Brooklyn was born with a Giant Congenital Melanocytic Nevus (GCMN), a giant birthmark covering most of her back, stomach, lower body, and legs, and has over a hundred smaller ‘satellite’ nevi or ‘spots’. GCMN affects 1 in every 500,000 people! A random gene mutation occurred within the first weeks of development in utero (she has the NRAS gene mutation). Brooklyn also has Neurocutaneous Melanocytosis (NCM), an even rarer condition associated with her GCMN (that involves melanin deposits on the brain or spine).

When Brooklyn was born, the doctors and nurses at our hospital had never seen a baby born with her condition. It was a normal pregnancy, free of complications and a quick and easy delivery. When she was born (at 6:32am), the doctor very calmly said “I have never seen this before…We are going to take her to the NICU.” Everyone was professional and calm – but you could hear the shock in her voice, and sense the worry and calm panic in the room. They fortunately allowed for a few minutes of skin to skin and nursing, and then Brooklyn was off to the NICU. In the NICU, the doctors suspected it was a different skin condition – characterized by extremely fragile skin that can blister easily externally and internally. Because of that suspected condition, they had her unclothed, no diaper, no blanket laying under a heat lamp for hours. We couldn’t hold her, and we were told we could carefully touch her or hold her finger. It took seven hours from birth to receive an updated diagnosis from another affiliated hospital from a specialist in dermatology. It was a giant birthmark, Giant Congenital Melanocytic Nevus (GCMN). That evening they released her from the NICU, we spent the night with Brooklyn, and we were discharged from the hospital the next day.

Later that week, we drove two hours to take Brooklyn, just a few days old, to see the dermatologist from the affiliated hospital who provided the GCMN diagnosis. (The dermatologist also referred us to a knowledgeable dermatologist at Children's National closer to our house where we would later continue care.) But it was then when we learned that Brooklyn “checked all the boxes” for risk factors for NCM, Neurocutaneous Melanocytosis (excess melanin within the central nervous system) and that we needed to schedule a MRI for her brain and spine. We learned that if she had NCM, she could be asymptomatic or symptomatic - with symptoms that often present within the first two years of life, or later in childhood. These symptoms could include developmental delays, seizures, hydrocephalus, and other neurological issues – some symptoms and complications that can be managed, but some with a poor outcome. We learned more about the risk of melanoma, both cutaneous melanoma and central nervous system melanoma (in the brain and spine). It was a lot to process. It was scary and devastating.

At two weeks old she had her MRI (quickly ordered by our new dermatologist at Children's National) – confirming that she had NCM. The MRI showed three melanin spots on her brain (temporal lobe, cerebellum and frontal lobe) and a lipoma (fatty tumor) on her spinal cord causing a tethered cord. Later that month, she had her first surgery under general anesthesia to remove and biopsy a lesion on her skin. The pathology results for that sample was not melanoma, but not clearly benign. “Atypical proliferative nodule of uncertain malignant potential” is what they concluded. The pathology and genetic testing also confirmed the NRAS gene mutation.

These first few months included a number of specialist appointments at Children’s National (DC/Fairfax) and even a trip to Boston Children's Hospital in October. We were taking care of a new baby, adjusting as a family of six, and navigating her diagnosis. Through all of this, our friends and family supported us with dinners, childcare, distractions and visits for all the kiddos to play.

On December 30th, the day before New Year’s Eve, Brooklyn had her second surgery – another excisional biopsy for multiple lesions requiring sedation.

Then, January was a big month for us. Brooklyn was five months old. She had a repeat MRI of her brain and spine and her tethered cord release surgery (spinal cord operation requiring a two-night hospital stay, where she had to lay flat to prevent spinal cord leak and infection). She would be turning six months old at the end of January. Maternity leave was ending and I was returning to work.

But January 2025, ended up bringing us good news! The results of her second biopsy indicated that those skin lesions were benign. The repeat MRI showed that the spots on her brain were stable and unchanged! Her tethered cord surgery was performed by an excellent neurosurgeon and was successful. She recovered incredibly – and seemed to be moving better, eating and sleeping better, and generally more comfortable. Life started to be a bit more normal, with some waves of uncertainty, but positive overall.

Six months later and we have a happy, spunky and energetic baby girl turning ONE!! We will continue with follow up appointments with dermatology and neurology, and monitoring any changes to her skin.

We are fortunate to have a great team at Children’s National (led by our dermatologist, neurologist, neurosurgeon and plastic surgeon) and a dermatologist at Boston Children’s who is one of the experts on CMN/GCMN and involved with research.The pathologist who performed Brooklyn’s biopsies and genetic testing at the NIH National Cancer Institute is also conducting ongoing research related to melanoma and CMN. However, overall - there is very limited research and funding for rare diseases. Research for NCM (brain and spine involvement) is extremely limited, making it an unpredictable diagnosis with a lot of unknown. We don’t know why some children are asymptomatic, and some symptomatic. We don’t know what causes progression of the disease. But we do know, if the disease progresses, it can be aggressive and there is no effective treatment or cure. We are thankful every day that Brooklyn is currently asymptomatic. We are thankful that Nevus Outreach is dedicated to improving CMN/NCM awareness, providing support and helping to fund research initiatives.  We hope that research will advance to find better, more effective treatments for CMN/NCM.

Our happy little girl is a reminder that every day is a blessing! She is crawling everywhere, trying to keep up with her older three siblings! We love her laugh and silly babbling - her personality is really starting to shine through! Her current favorite activities include getting into trouble climbing the stairs, opening kitchen cabinets, and playing outside. 

Please join us in celebrating Brooklyn's first birthday, what makes her special, unique and beautiful. We aim to spread awareness, encourage normalization and acceptance. Our hope is for Brooklyn to grow up supported and loved and comfortable in her skin. We will do our best to raise her to be confident, to embrace her skin and uniqueness, but not be defined or (or limited) by her conditions. 

Happy Birthday, Brooklyn! 

Would you like to learn more about Nevus outreach? Visit Nevus.org to see all the amazing work our community, board, and staff are doing to enhance the lives of those with CMN, NCM, and related conditions.

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