Mashpee student's absences due to sickle cell disease draws district attorney attention

After Jayden Wilsey was admitted to a Boston hospital for debilitating pain associated with sickle cell anemia, his father Aubrey received a letter from the Cape and Islands District Attorney's Office requiring him to attend a hearing on Oct. 27 regarding his son's absences from Mashpee Middle-High School.

"When the school called the district attorney's office, I feel that was totally out of line," said Aubrey Wilsey.

The Oct. 16 letter states that Kathleen McSweeney, interim principal of the school, notified the district attorney's office about what was described as Jayden's excessive absenteeism and tardiness. Wilsey isn't sure how many days Jayden, 13, has missed since the beginning of the school year, but admits "it's a lot."

"They know Jayden’s absences aren’t willful. You can’t hold him accountable because of his medical issues," Wilsey said Thursday by phone.

The letter states that a child is considered truant if there are more than seven full days or 14 partial days missed in a 6-month period. The letter was provided to the Times by Jessie Little Doe Baird, Jayden's grandmother and a member of the Mashpee Wampanoag Tribe.

Wilsey, according to the letter, was required to show up to the hearing or he and his son could face court action and a child requiring assistance or CRA petition, which would be filed by police in juvenile court with an expedited hearing date.

Little Doe Baird said she was infuriated by the letter, and the required hearing. Jayden is in excruciating pain most days, she said, and the school is responsible for providing an education for him under section 504 of the Rehabilitation Act of 1973, a precursor of the Americans With Disabilities Act.

"Instead, my family is being threatened with legal action and more charges," said Little Doe Baird. "I wonder if this happens to white students who are chronically ill and disabled?"

Jayden has sickle cell beta thalassemia, a rare form of the disease, which is inherited by parents who both carry the sickle cell trait.

"I carry the trait and his mom carries the trait. And if you have a child, there’s a 25% chance that child could have sickle cell," Wilsey said. Wilsey, who was born in Brockton but moved to the Cape at age 11, didn't know he carried the trait until Jayden was tested when he was born.

"There was no testing for sickle cell when we were younger," he said.

Sickle cell disease affects millions of people throughout the world, according to the Centers for Disease Control and Prevention. The disease affects approximately 100,000 Americans.

What is the school's response?

There's been weekly communication with Wilsey by school counselors, Patricia DeBoer, the superintendent of Mashpee Public Schools, said.

DeBoer didn't name the school counselor but said the school has been positive, productive, and focused on helping the family and student navigate the challenges they are facing.

"This student is not being targeted," said DeBoer in an email sent Thursday. "Our school staff — teachers, counselors, administrators, and our MMHS nurse, have consistently provided support in multiple ways to this student and his father."

No one from the school informed him about the hearing, prior to receiving the letter, Wilsey said.

Meeting held Oct. 27 at Mashpee school

Wilsey met with Mashpee Middle-High School counselors, a school nurse, a school dean, a representative from the district attorney's office, and two people from the Cape Cod Family Resource Center in Hyannis on Oct. 27, he said. The hearing was held at the school.

McSweeney did not attend the meeting.

Wilsey said he explained to the group that Jayden was born with sickle cell anemia, and has developed debilitating chronic pain in the last 2 ⅟₂ years, and because of the pain Jayden can’t play sports, and often can't make it through an entire school day.

"His sickle cell has changed over time," he said by phone. "The chronic pain impacts his nerves."

The school has historically supported his family throughout his son's health issues. But McSweeney dropped the ball, said Wilsey. The threat of a petition and the possible involvement of the state Child Protective Services agency, was unnecessary, he said.McSweeney did not return a Times request for comment left by phone at her office.

Keep them Coming

In general, letters like the one Wilsey received are sent when school officials reach out to the district attorney's office about children who are chronically truant and absent from school, according to Danielle Whitney, a spokeswoman for the Cape and Islands District Attorney’s Office. Families with a child who is a "habitual school offender," a child who has problems following school rules, also receive letters and are required to attend hearings, Whitney said.

Families are then entered into the "Keep Them Coming" prevention program.

"We act as a facilitator," said Whitney.

If there’s no improvement with attendance or a redirection of behavior after a meeting, Whitney said the school can go to Barnstable Juvenile Court and file what’s known as a CRA."

The state Department of Child and Families is involved so families understand what happens when a CRA, or child requiring assistance petition, is opened. Despite the possibility of court involvement, Whitney said the meetings aren't punitive.

"We want to go over what the barriers are for a child and figure out what's going on with this child that keeps them from going to school," she said.

School officials are obligated to report to the state when they have a juvenile reaching a certain amount of absences, Whitney said.

The “Keep Them Coming” program also brings together various community resources to support families, said DeBoer. "There are no police charges or punishment."

The mention of a child requiring assistance petition in the letter made her family uncomfortable, Little Doe Baird said.

At the hearing, Wilsey said the group discussed accommodating Jayden's illness with a tutor, and a plan to help Jayden leave school early when he's experiencing intense pain.

Wilsey said, though, he remains leery of the Keep Them Coming program. "Most of the kids this is happening to are minorities from families of color — kids from low-income homes, and those that are living in low-income housing," he said. "That’s who's being targeted."

What is Sickle Cell Anemia?

Sickle cell disease symptoms can include severe anemia, and infection, and debilitating pain, according to Matthew Heeney, a physician board certified in pediatrics and pediatric hematology/oncology at Dana-Farber Boston Children's Cancer and Blood Disorders Center. Heeney, who is Jayden's doctor, wrote to the school on Oct. 25. In the letter he said the illness comes with chronic neuropathic pain episodes that can lead to hospitalization and life-threatening consequences.

"When enough cells have sickled," wrote Heeney in the letter provided to the Times by Little Doe Baird, "the deformed cells can collectively block small blood vessels depriving the surrounding tissue of oxygen leading to high levels of pain."

Wilsey recently found a bone marrow match for Jayden.

"He will hopefully have the bone marrow transplant next summer," Little Doe Baird said. "We are hoping that will save his life."

The US Food and Drug Administration is also currently considering approving gene therapy as a potential treatment for eligible sickle cell patients, according to USA Today. Such treatment costs about $3.5 million per patient.

As a young child, Jayden had intermittent pain that lasted for roughly a week to 10 days. Now the pain doesn't go away, said Wilsey.

In 2020, Wilsey realized that Jayden felt left out after missing so much school due to his disease. It was then that he started “The Dweeb Movement,” a program he created to promote kindness and educate youths about mental health problems.

"If you know someone who suffers from sickle cell or chronic pain — they may look OK one minute but are then in so much pain the next," he said. "It's not up to us to judge them. Just be aware and give support to people when they need it."

Rachael Devaney writes about community and culture. Reach her at rdevaney@capecodonline.com. Follow her on Twitter: @RachaelDevaney.

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This article originally appeared on Cape Cod Times: Ill Mashpee student's absences under state, district attorney review