Special Dolls for Children With Rare Diseases

Ariella Pacheco of Encinitas, California is a 17-year-old in her senior year at a Carmel Valley Catholic School. Ariella spoke to a reporter for MSN about her new-found passion to create dolls for children who had cranial and facial surgeries through Fresh Start Surgical Gifts of Carlsbad.

Fresh Start is a charitable organization that offers free surgeries and various medical procedures to children from families whose insurance excludes cosmetic surgical procedures or who simply cannot afford treatment.

A Doll Can Be a Companion

Ariella, who has chosen to create special dolls for special children, described how on her birthday her mother handed her an American Girl catalog. She told Ariella to choose any doll in the catalog.  Ariella noticed one doll that looked somewhat like her and immediately chose that doll.

It was more than just a favorite toy. Arielle said that she felt it was part of her. Then through the years, she wondered about children who could not have that connection. Who have medical conditions that set them apart from other children and they certainly cannot identify with the mass-produced dolls in the American Girl catalog.

Three Children with Unique Physical Challenges

For the last few months, Ariella has been busy designing and sewing cloth dolls for four local young people, each with a different medical condition.

The children are:

  • Felix, age six. He is dealing with a surgical scar from an operation to repair a large skull fracture
  • Andrea, age two, who has a conspicuous port-wine birthmark on her face
  • Valeria, a toddler with Apert syndrome causing fused fingers and misshapen eyes.

Three of the recipients are local children, but the fourth is twenty-one-year -old Zulema Gillett who was born with Goldenhar syndrome. The disorder has left Zulema with a jaw that is misaligned, only one ear, and a cleft lip.

Zulema explained that she was bullied as a child, but her family remained supportive. After searching for years, her mother finally found Fresh Start where Zulema has undergone six surgeries with another surgery planned that will construct a new ear.

Not only has Fresh Start instilled self-confidence, but the agency has found an internship for Zulema in a dentist’s office. Her eventual goal is to establish a career in biology.

Fresh Start Began in 1991

Dr. Dennis Nigro, a plastic surgeon based in San Diego, donated a great deal of his time performing surgeries for children who came from low-income families.

Dr. Nigro passed away in 2009, but his work has continued through surgeons and other medical specialists.  These dedicated professionals contribute thirteen to fifteen weekends each year performing their free services at Rady Children’s facility.

To date, Fresh Start has performed services for 8,258 children through 21,276 medical procedures at an estimated cost of $45.7 million.

An Idea Became a Reality

Ariella, who is preparing to work in the field of public health, thought her idea of designing dolls that mimic the unique characteristics of these special children would be an excellent school project for this year’s National Honor Society event.

Ariella’s idea originated from a magazine article entitled “A Doll Like Me”. The article described a project that made dolls for disabled children. Ariella contacted Fresh Start for permission to provide dolls for its children.

Ariella had gone to a sewing camp as a child and was able to sew clothes for herself and for her dolls.

In an effort to have the children bond with the doll, Ariella becomes familiar with the children, often learning about their hobbies, favorite sports, and their favorite colors.

She admits that it took a long time and many trials and errors to finally re-create the child’s uniqueness. She is passionate about the children seeing themselves in the dolls but without a prominent abnormality.

Her project is now complete, and the dolls will be delivered shortly.

Ariella concluded by saying that each child is so unique and special. She has put all her love into each doll and hopes that the dolls will improve the children’s self-esteem.

Her mission, as she explained it, is to create dolls that will enable the children to see themselves in a good light.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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