North

Her mother fights the system for Sophia

Colby Jackman with her daughter Sophia Jackman, 4, at home in Methuen, MA. Saturday, Oct. 14, 2017. 4-year-old Sophia Jackman has an extremely rare genetic disease called Rhizomelic Chondrodysplasia Punctata, or RCDP. It prevents her from growing at a normal rate. She weighs only 15 pounds and suffers many disabilities, both physical and cognitive. CREDIT: Cheryl Senter for The Boston Globe
Cheryl Senter for The Boston Globe
Colby Jackman prepares her daughter Sophia, 4, for a ride in her stroller.

METHUEN — On a sunny fall afternoon, 4-year-old Sophia Jackman isn’t at preschool like many of her peers. Instead, she’s home in her Mill Falls apartment, laughing with eyes closed as her mother’s boyfriend tips her back and forth in his lap.

This isn’t what her mother, Colby Jackman, envisioned when the family moved from Newbury to Methuen in September. Her hope was for infant-sized Sophia to attend school, as she did in Newbury at age 3 despite being severely disabled with a rare form of dwarfism called rhizomelic chondrodysplasia punctata, or RCDP.

One promising option, in Colby’s view, is located 9 miles away at The Professional Center for Child Development in Andover. If she’s deemed a fit, and if the Methuen Public Schools were to cover the $84,500 tuition, then Sophia would use specialized equipment and interact with highly trained staffers experienced with non-verbal, medically complex children.

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But a hurdle emerged when the Methuen Public Schools instead offered her a special education spot among 1,500 students at the Timony Grammar School. Colby and Sophia’s state-assigned nurse at the time, Michelle Martinez, found the setting too risky.

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A routine cold or another virus can be life-threatening for Sophia, who is prone to respiratory complications and has a life expectancy of less than 10 years. What’s more, Colby worries the school isn’t equipped to educate someone with her disorder, which appears in fewer than 100 known cases worldwide.

Cheryl Senter for The Boston Globe
Two 4-year-olds: Sophia Jackman and her nurses’s daughter, Aneesa Valdez (right), with Lily Carrion in Methuen.

“It’s not that she just can’t talk or she just can’t hear or she just can’t see — she can barely do any of them,” Colby said. “Because of that, I feel like she needs to be with therapists who have a lot of experience with kids who are similar to her.”

Now Colby, 23, has put her own schooling and work on hold to tackle a new challenge. She’s asking for out-of-district placement for Sophia in a school for severely disabled kids. The case has gone to mediation, according to Carol Silva, a special education advocate Colby hired on the basis of a referral from the Federation for Children with Special Needs. Silva said the district is looking into testing options to assess what type of environment Sophia needs.

“I thought it was hard before” when Sophia was younger, Colby said. “But ever since we started school, especially being here [in Methuen], it’s a whole other type of fight.”

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Judith Scanell, superintendent of Methuen schools, did not respond to multiple requests for comment.

Whether schooling is worthwhile for so-called Rhizo kids, in light of their extreme cognitive impairments and vulnerabilities, is a decision left to each family. Many opt to keep the kids home because they see risks of school outweighing potential benefits, according to Dr. Michael Bober, a geneticist who studies RCDP at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del.

But some RCDP kids can make meaningful progress at school and elsewhere, according to Bober. Sophia’s pediatrician, Dr. Alice Merkrebs of Newburyport, supports the effort to educate the 15-pound patient she calls “Tiny.”

“We don’t know what her capabilities are, [but] miracles happen,” Merkrebs said. “If giving her this special care and attention brings out more of her capabilities, she could surprise everybody.”

For Sophia, attending school would mean managing a host of conditions and therapies while gearing expectations to her level. Her nurse would stay with her through the day to handle her feeding and venting tubes and watch for changes, including seizures, which she began having this year.

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By law, a program must provide for meaningful academic, social, and emotional progress in keeping with a student’s unique circumstances, according to Joe Green, an attorney who represents plaintiffs in special education cases for the Boston law firm Kotin, Crabtree & Strong.

“It’s the parents’ burden to show that the school district cannot do that,” Green said.

Pinning down a student’s potential and defining meaningful progress can be tricky. For instance, last year at Newbury Elementary School, Sophia didn’t reach her individualized education plan goal of tracking a moving object with her eyes through bottle-thick glasses, but she made other progress, Colby said. She’s now more aware of activity around her, and when she gets overstimulated, she recovers faster than when she was younger.

Showing that a child needs out-of-district placement often involves out-of-pocket costs for a family as it commissions its own expert testing, Green said. The rarer the circumstances, the stronger the case often can be.

“Given the uniqueness of this condition, I think she has a good shot,” Green said. “I’m surprised the district doesn’t come out and offer something more specialized.”

However, retaining experts to document the need could be difficult for the family. “I think it’s going to be tough for them to afford it,” Silva said.

For now, hopes hang on prospects that district-funded testing will reveal a need for specialized outplacement.

“It’s always a concern that [district-sponsored testing] is not going to be independent, but we’re hoping in good faith that they’re going to act in good faith,” Silva said. “We’re hoping that testing is going to show she is going to need a very supportive environment that meets her medical needs.”

Colby believes Sophia needs a small school like the Professional Center, equipped with specialists and tailored equipment, including what’s known as augmentative communication. It involves devices that enable students to express thoughts via instruments, such as an adapted toy or iPad, working with a child’s strengths. Sophia needs special equipment these days even for basic transportation, Colby said. A GoFundMe campaign aims to raise $10,000 for the family to buy a used van that can be made wheelchair-accessible.

Whether Sophia’s likely progress is proportional to the cost makes no difference, Green said. A district has to do what the law requires, regardless of cost. The challenge will be to determine whether proposed accommodations for Sophia at Timony School, such as a separate entrance and an environment set apart from other classrooms, are sufficient to satisfy the legal threshold.

While schooling issues get sorted out, Sophia is getting extra time to bond with her new Methuen friends. The family has a new puppy who joins Sophia on the floor when she’s lying on her back, looking up at her homemade mobile. She lights up around Lily and Sophia Carrion, the young daughters of Colby’s boyfriend, Jonathan Carrion. She smiles when they hold her during visits with their dad.

“She’s my baby now,” Lily announces. “I like to kiss her and hug her and never give her back.”

Heading to the park across the street from their new home are boyfriend Jonathan Carrion, second from left, with daughters Sophia, left and Lily, middle, and Colby Jackman, right, with her daughter Sophia Jackman, 4, in Methuen, MA. Saturday, Oct. 14, 2017. 4-year-old Sophia Jackman has an extremely rare genetic disease called Rhizomelic Chondrodysplasia Punctata, or RCDP. It prevents her from growing at a normal rate. She weighs only 15 pounds and suffers many disabilities, both physical and cognitive. CREDIT: Cheryl Senter for The Boston Globe
Cheryl Senter for The Boston Globe
Heading to the park: Jonathan Carrion with daughters Sophia and Lily, Colby Jackman with her daughter Sophia.

G. Jeffrey MacDonald can be reached at g.jeffrey.macdonald@gmail.com.