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EWBURY — Weighing just 12 pounds, Sophia Jackman wore infant-sized clothing to her third birthday party on May 9. But she’s big enough to go to preschool now, and she’s riding some big dreams to get there.

Sophia is receiving loads of support, both literally and figuratively, as she gets ready to become the smallest student ever at Newbury Elementary School. On a recent spring afternoon, her wheelchair held her upright as she practiced for art time. Her mother, Colby Jackman, guided her tiny hand to squiggle with a scented marker on an erasable canvas. Her grandmother and aunt cheered her on.

Being extraordinarily small is perhaps the least of Sophia’s challenges. She was born with rhizomelic chondrodysplasia punctata, a rare genetic disorder thought to exist in fewer than 100 children worldwide. The condition brings a barrage of serious difficulties: stiff joints, blurred vision, cognitive impairment, digestive issues, respiratory problems, and a life expectancy of less than 10 years. Part of every meal is delivered via feeding tube, yet her cells still won’t let Sophia grow.

For all her challenges, Sophia is making progress at her own pace. After a difficult first two years that included multiple surgeries, she was hospitalized only once last year, for virus complications that required oxygen therapy over three days.

Otherwise, she’s been notching milestones. She now holds her head up by herself. She tracks moving objects through her thick eyeglasses. She loves to jump when someone holds her up, and she laughs so hard sometimes that she has to catch her breath.

“She can say, ‘hi,’ ’’ Jackman said proudly. “She can say, ‘mama.’ And she can say ‘an’ for ‘auntie.’ And once in a while, she just started saying, ‘wuv you.’ ’’

By preparing for school, Sophia is embarking on a path rarely traveled by children who’ve been diagnosed with severe or classic RCDP. Their parents generally worry about infection risk from germs at school because these kids can’t easily fight off respiratory illnesses, according to Dr. Michael Bober, a geneticist who studies RCDP at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del.

“Most of the classic children have significant differences in their potential to learn,’’ Bober said. “When you weigh the risks and the benefits, oftentimes the families opt for keeping the kids at home.’’

But Jackman is determined to give her daughter a chance to reach her potential, whatever that may be. She doesn’t appreciate hearing low expectations for Sophia. She once switched doctors when the physician insisted Sophia would never walk and therefore shouldn’t get braces for her legs. She’s not bending now to those who might say school is pointless or too risky.

“If I shelter her from things because she is disabled, how are we ever going to know that she can do all these things?’’ Jackson asked. “I don’t limit her. She has that right, as a child, to do things other children do. Keeping her at home and sheltering her from the world [would be] a shame.’’

RCDP kids can learn to do more over time whether they go to school or not, according to Bober. He stressed the importance of receiving various therapies. Through school, Sophia will continue receiving therapy in five areas: occupational, feeding, physical, vision, and speech. She also will have an individualized education program and a nurse assigned solely to her.

“The encouragement of learning, being put in a nurturing environment, and having a focus on progress can only be a good thing,’’ Bober said. “It just needs to be tempered with the risk for infection.’’

A draft of Sophia’s school plan reflects the severity of her disability. Educational goals begin with tracking a moving object. Later, she’ll try to identify items on a tray when a teacher gives her audible clues.

Though the Triton Regional School District hasn’t ever had a child with her diagnosis, the district has had other children with needs similar to hers and is prepared to educate her, according to David Magee, administrator of special education. She will receive aids, such as oversized art tools, so she can participate in regular classroom activities. She’ll also receive more time with therapists than she gets now, and Magee isn’t going to cap what she’s capable of doing.

“We don’t know what’s in a child’s mind when they’re unable to speak,’’ Magee said. “There have been too many stories . . . where their physical disability is masking what’s inside.’’

Sophia’s family is both excited and nervous about her going to school. Her grandmother, Eva Jackman, said it’s scary but important for her quality of life. Her aunt, Janelle Spector of Newbury, was against preschool for Sophia at first but changed her mind.

“I didn’t want to see her go because that means less control,’’ Spector said. “She can’t communicate. What if she was upset and she couldn’t tell anyone? But then after Colby started going through the process, it was like, ‘Yeah, she does need to go because she needs these tools that she can’t always get at home.’ ’’

The hope is that Sophia, in visits to Newbury Elementary this summer, will start getting as comfortable with the school as the rest of her family already is. Colby Jackman attended the same school less than 20 years ago, and now her former teachers might soon have her daughter in their classrooms. Jackman trusts they’ll see potential in Sophia and urge her to emulate the other, less disabled children.

“Just her seeing other kids, I can tell, she’s thinking, ‘I want to get down, too. I want to play, too,’ ’’ Jackman said. “If you don’t let them do things, how are they going to get stronger?’’

G. Jeffrey MacDonald can be reached at g.jeffrey.macdonald@gmail.com. Follow him on Twitter @gjmacdonald.