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Eleven-month-old Weston is a happy, chubby, sweet baby. His older brother, Ryker, and older sister, Harley, adore him, and he smiles easily at new friends.

But his mom, Kimi, will never forget the first moments after Weston was born at a hospital near where the military family is stationed at the Naval Postgraduate School in Monterey, California.

“I heard a nurse say, ʻWhat is that?ʼ and then someone told my husband, Nathan, that they were going to push a red button to call the NICU team,” Kimi recalls.

The nurses saw “spots” on Weston’s head and down his back. The spots are called congenital melanocytic nevi, or CMN—lesions, sometimes with tufts of hair, that can be found all over a baby’s body. The lesions are often benign but may be a sign of rare, more serious conditions.

The family was referred to Lucile Packard Children’s Hospital Stanford so Weston could undergo an MRI for a full diagnosis.

A Shocking Diagnosis

The MRI showed that Weston had neurocutaneous melanosis. The lesions were present not just on his skin, but also in his central nervous system, including his brain. Devastated, the family met with a team of Packard Children’s doctors, including a neurologist and a dermatologist.

Thankfully, the MRI revealed that Westonʼs brain and nervous system were not negatively impacted by the melanosis. He returned home but is vigilantly monitored by his care team to track any growth or changes in his lesions. Unfortunately, if the lesions in the brain or nervous system become malignant or symptomatic, treatment options are very limited.

Susy Jeng, MD, Westonʼs neurologist, says she feels fortunate to be part of his comprehensive care team. “Weston has been all smiles from the minute I met him,” Dr. Jeng says.

Kimi and Nathan are deeply grateful for the support and care they have received at Packard Children’s Hospital.

We treat children with rare diseases and complex needs that other hospitals cannot. While discovering the innovative cures of tomorrow, we keep an eye on providing the best quality of life today. Weston receives physical and occupational therapy every week to support his development.

Different is Beautiful

In June, we honored Weston at our largest community fundraiser as a Summer Scamper Patient Hero. Kimi enjoyed raising awareness about children with CMN.

“It’s not something that you see every day,” Kimi says, describing the triangular patch of hair on Westonʼs forehead and the spots elsewhere on his body. “Highlighting that different can be beautiful is important.”

From the first MRI at our hospital, Dr. Jeng has watched Westonʼs family take his diagnosis and turn it into action. “I am struck by how they have become a positive force in the national neurocutaneous melanosis community,” Jeng says.

Westonʼs family directed their Scamper fundraising toward the Children’s Fund. Kimi says that supporting research; extraordinary care for families with limited financial resources; and impactful programs like our chaplaincy, child life, and the Teen Health Van, felt right.

“I feel incredibly blessed that we can get this amazing care,” Kimi says. “I want to give back as much as I can so if someone else is born in Westonʼs shoes, their family doesn’t have to suffer; they can go to Packard Children’s for incredible treatment.”

Thank you for supporting compassionate care for children like Weston!

This story originally appeared in the Fall 2023 issue of the Children’s Fund Update.