Encinitas teen’s dolls are tailor-made for children with rare medical conditions – Encinitas Advocate

When Encinitas teenager Ariella Pacheco was a little girl, her parents let her choose from a catalog the American Girl doll that most appealed to her. She picked the one with the hair color and style that matched her own.

“She looked like me and I felt there was a piece of me in her,” said Pacheco, now 17. “You see yourself in a doll and it’s really special to have that connection.”

But what about children with rare medical conditions who don’t look like anyone else, including the mass-produced dolls on store shelves? Pacheco wanted to give these children the same gift she got as a child. So, over the past several months, she has designed and sewn cloth dolls for four local youth who have between them a port-wine stain birthmark, surgical scars, a jaw alignment issue and face and cranial differences.

“I really value the beauty in the little things,” Pacheco said. “Each of these kids are so unique, so special. I hope through these dolls they can see themselves in a new light and really embrace their beauty.”

One of the doll recipients is no longer a child, but she’s honored to have been chosen for the project. Zulema Gillett, 21, of Temecula has Goldenhar syndrome, which caused her to be born with a cleft lip, a misaligned jaw and only one ear. She loves the idea of special dolls for special children.

“Who doesn’t want a doll that looks like them that they could relate to?” Gillett said. “It’s really nice and very thoughtful.”

Pacheco, who plans to pursue a career in public health, is an incoming senior at Cathedral Catholic High School in Carmel Valley. She designed the dolls as her annual service project for the school’s National Honor Society chapter. The four doll recipients are all clients of Fresh Start Surgical Gifts in Carlsbad. The 19-year-old charitable organization provides free surgeries and other medical treatment for children whose families can’t afford it or whose insurance doesn’t cover cosmetic surgical procedures.

Michelle Pius, chief development officer for Fresh Start Surgical Gifts, said she was “blown away” when she got her first look at the dolls Pacheco created for her clients. She said the children Fresh Start serves tend to be shy about their appearance in public. But when they meet each other in the surgical clinic, especially the toddlers, they’re eager to connect with each other because they feel a shared bond.

“It was a very kind and big-hearted gesture on her part to make dolls that will help a child feel like they’re not alone,” Pius said of the dolls.

Pacheco got the idea for the doll project in January after remembering a magazine story she’d read about Milwaukee doll designer Amy Jandrisevits, whose “A Doll Like Me” project makes custom look-alike dolls for children with disabilities. Pacheco reached out to Pius at Fresh Start and asked if she could create similar dolls for some of its clients.

Pius said she was hooked right away because her now-grown daughter’s favorite doll when she was young had eyeglasses like her own. Pius sent Pacheco pictures and information on several clients who might enjoy a doll and Pacheco narrowed it down to four. Initially it was meant to be a group project with several other Cathedral students, but when the pandemic struck and the school closed, she forged on with the project alone.

Pacheco juggled the sewing project this summer with an online internship she just finished up at the UC San Diego Center for Community Health. For many years, she has been passionate about running, her personal health and eating a healthy diet. But lately she has realized that not everyone has the same access that she has to nutritious foods and outdoor activities and she wants to help solve those disparities in her future career.

Pacheco said her parents, Lydia Sandoval and John Pacheco, aren’t artists, but they’ve always supported her creative endeavors. At Sanderling Waldorf elementary school in Encinitas, she did a lot of art projects and attended sewing camp. When she got her own sewing machine, she taught herself to sew blankets, napkins, skirts for herself and clothes for her dolls.

For this project, she found out the subjects’ favorite sports or hobbies and their favorite colors. She watched doll-making tutorials on Youtube, designed her own patterns and figured out how to re-create the children’s differences through a long series of trials and errors. It was important to her that the children recognize themselves in the dolls but that their differences not be the most noticeable feature. She finished the dolls just last weekend and will be delivering them soon to Fresh Start for distribution to the clients.

“I hope they’re really excited with them,” Pacheco said. “The whole time I was trying to put as much love into it as I could and hoped they represented each child faithfully.”

The inspiration for the four dolls are Felix, a 6-year-old boy with a large scar on his head from surgery for a skull fracture; Andrea, a 2-year-old with a port-wine stain birthmark on her face; Valeria, a toddler with Apert syndrome, which causes skull deformities, misshapen eyes and fused fingers; and Zulema Gillett.

Born in Oceanside and raised in Vista and Hemet, Gillett said she was bullied as a child over her appearance. Fortunately, her supportive family never made her feel different. Her mother spent many years searching for a surgeon who would operate on Zulema, but faced rejection after rejection until they found Fresh Start in 2016. In the five years since, Gillett has had five or six surgeries on her lips, jaw and teeth and will soon have another to construct her missing ear.

Gillett said the experience with Fresh Start has changed her life. She now feels more confidence and self-esteem and it has inspired her future career. She is now interning at a dental office through Fresh Start as the final part of a dental assistant certificate program. Her dream is to earn a four-year degree in biology and work as a biologist.

Gillette’s long relationship with Fresh Start is common, Pius said, because many of the children under 18 who they accept for treatment require multiple surgeries and years of follow-up treatment that can stretch well into adulthood.

Fresh Start was founded in 1991 by Dr. Dennis Nigro, a San Diego plastic surgeon who donated much of his career to doing surgeries on poor children with correctable conditions. He passed away in 2009, but today the organization has an all-volunteer team of more than 80 surgeons, anesthesiologists, orthodontists, dentists, audiologists, nurses, therapists and more who donate their services at surgical weekends 13 to 15 times a year at Rady Children’s Hospital. As of June 30, Fresh Start had served 8,258 children with 21,276 medical procedures with an estimated $45.7 million, Pius said.

Because of the pandemic, the organization hasn’t been doing massive weekend events but has carried on doing individual surgeries. Pius encourages families who have lost their jobs and health care during the pandemic to reach out to Fresh Start if their children need surgeries. For information, visit freshstart.org.

— Pam Kragen is a reporter for The San Diego Union Tribune