Baby brother, nap enthusiast, and rare disease ambassador
Seven-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.
He is a mama’s boy, so he starts his days just as he ends them—in his mom’s arms. He loves taking trips to the Monterey Bay Aquarium and just started eating solids.
“He’s yet to sleep through the night, but we like to think he likes to wake up to make sure we feel needed!” says Weston’s mom, Kimi.
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.
“I heard a nurse say, ‘What is that?’ and then someone told my husband Nathan that they were going to push a red button to call the NICU team,” Kimi recalls. “I immediately thought that Weston was missing a limb.”
The nurses had seen “spots” on Weston’s head and down his back. The spots were an indication of a condition called congenital melanocytic nevi, where skin lesions—sometimes with tufts of hair—are present at birth or shortly after and 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 care team at the hospital where Weston was born sent the family to Lucile Packard Children’s Hospital Stanford so Weston could undergo an MRI for a full diagnosis. At just 21 days old, Weston and Kimi entered our hospital for what was anticipated to be a 30-minute scan. More than three hours later, the team was still working with Weston.
Eventually Weston was back in Kimi’s arms when a doctor came by to share the upsetting news: 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. Kimi was devastated and called Nathan, who was at home with Harley and Ryker.
Soon the family met with a team of Packard Children’s doctors, including a neurologist and dermatologist, to determine the next steps for Weston. Thankfully, the MRI revealed that currently Weston’s brain and nervous system are not negatively impacted by the melanosis. He was able to return home, but the team is committed to his ongoing well-being.
“He has to be monitored frequently,” Kimi says, describing the doctors’ vigilance to track any growth or changes in Weston’s lesions. Unfortunately, if the lesions in the brain or nervous system become malignant or symptomatic, treatment options are very limited.
“We visit his dermatologist, Shehla Admani, every three months,” Kimi explains. “And then we go to the neurologist every six months. Thankfully, he’s been asymptomatic, which usually has a very good prognosis.”
Kimi and Nathan are deeply grateful for the support and care they have received at Packard Children’s.
“We’re now seven months in. He’s in physical therapy and occupational therapy every week just to kind of keep him up on his developmental status. And we think he is doing great.”
When they heard about Summer Scamper, Nathan, a marathon runner, jumped at the chance to participate and give back to the hospital that has been a big part of Weston’s life. Kimi says she is looking forward to an opportunity to raise awareness about children just like Weston in the nevus community.
“It’s not something that you see every day,” she says, describing the triangular patch of hair on Weston’s forehead and the spots elsewhere on his body. “And I feel like maybe just highlighting that different can be beautiful for me is important, because bullying is obviously something that we have to worry about in future.”
When asked about what area of the hospital they’d like to fundraise for, Kimi noted that the Children’s Fund, which supports research, extraordinary care for families with limited financial resources, and impactful programs like our chaplaincy, child life, and the Teen Health Van, was a meaningful direction.
“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 Weston’s shoes, their family doesn’t have to suffer; they can go to Packard Children’s for incredible treatment.”
Thank you so much for supporting compassionate care for children like Weston. Please join Weston and his family at Summer Scamper on June 25. We can guarantee a smile from Weston will make your day!