By Erin Albanese

School News Network

Teresa Dood, Parkview Elementary’s Kent School Services Network coordinator, brings an awareness that is deep and real to her job linking families with resources.

For her, navigating complicated systems and overcoming seemingly impossible barriers is personal.

From her school office, Dood explains how heartbreaking experiences can, with time, become life lessons that allow her to relate to other families and empathize with what they face. Consider her current battle: Dood is the single mother of three adopted children, one of whom has Duchenne muscular dystrophy and needs a potentially life-prolonging medication that insurance keeps denying.

A year and a half ago, Dood was fostering her son, now 4, and preparing to adopt him when he was diagnosed with Duchenne, a rare genetic disorder that overwhelmingly affects boys and is characterized by progressive muscle degeneration and weakness. (He and his siblings’ names are not being published due to privacy concerns.) The typical life expectancy of a person with Duchenne is the early 20s.

“That was devastating to me: to learn that this little boy who I so deeply love would have yet another challenge outside of other early-life trauma to overcome, that will ultimately end his life,” Dood said.

But Dood’s son is among 13 percent of Duchenne patients with a genetic mutation that qualifies him for a newly approved drug called Exondys 51, a gene-skipping therapy, which was given accelerated approval by the Food and Drug Administration. Said Dood, “It has the potential to give him a typical lifespan.”

However, the drug costs a minimum $300,000 a year for weekly injections — and Dood’s son needs it for the rest of his life.

She has gone through all internal appeals within Medicaid and received repeated denials, because drug studies on Exondys 51 were not expansive enough. Her claim will next go to an external appeal through the State of Michigan. Other families are facing similar battles to get the drug covered.

“My son won’t get back the skills he has already lost, but it will help maintain his skill levels,” Dood said.

She’s hoping if the external appeal is denied, the drug manufacturer, Sarepta Therapeutics, will cover the cost of the drug because her son can provide valuable data for further study of the medication.

She’s That Go-to Person

At Parkview, where approximately 90 percent of families qualify for free or reduced lunch, Dood works with students and families to eliminate barriers to students’ success at school and establish community partnerships to meet larger schoolwide needs.

A Wyoming native, she has formed partnerships with churches, and received grant funding for a monthly visit from a Feeding America Food Truck. She is starting a program called Good Guys to bring in fathers and other male role models to volunteer.

Parkview teacher Lori Schimmelmann said Dood is the go-to person for many needs at Parkview.

“Teresa gives of herself 110 percent for our Parkview kids,” Schimmelmann said. “When we have a student with a need, Teresa is the first person we call. If she can’t help us, she finds us someone that can. She does everything in her power to make sure that our Parkview kids have what they need to be successful.”

Dood has a bachelor’s degree in secondary education from Calvin College. She taught for a brief time before switching to children’s and youth ministry positions at local churches for 10 years. After that, she became a site coordinator for TEAM 21, the after-school program serving Wyoming Public Schools, for several years before beginning as the KSSN coordinator five years ago.

“I am passionate about impacting kids and families in our community, and I’m passionate about education,” Dood said. “I also see how sometimes people’s life challenges get in the way of kids being successful.

“I get excited when I see families come full circle from sometimes needing a lot of supports or resources, to becoming empowered and equipping their family to then being able to share that with others.”

It’s Dood’s everyday interactions with students and families that stands out most, said Principal Katie Jobson.

“Teresa does a great job building relationship with families,” Jobson said. “She brings a good balance between understanding what might be a barrier to families, and seeing the education perspective of what schools are trying to accomplish. She’s really good at bridging those gaps so we are all on the same team.

“Her own unique set of personal experience help her understand where families are coming from in a way that other people may not be able to understand,” she added. “That’s always a comfort to families to understand that somebody gets it.”

Learning the System

Those personal experiences include fostering 20 children over the years and raising her adopted children from infancy. Explained Dood, “I describe foster care as having some of the greatest highs and the greatest lows. There’s amazing joy … yet there’s been some really hard stuff too.”

There’s also been a lot of navigating red tape.

“I have experiences of going through the IEP (Individualized Education Program for special education students) and having a child with significant behavioral challenges, and I know how it is to work the public mental health system in Kent County,” she said.

She also knows about judgment quickly cast on parents of children with mental health challenges. She wants to lift up families and break down stereotypes and stigmas: “I’ve walked the mental health world with my kids and seen how taxing that is with the other kids in the family and the parents.”

So now she walks beside parents, building relationships and being supportive. To them she can say, “‘You know, I get how hard it is. … I get that it’s hard and I get that it’s a sacrifice, but your kid needs you to be part of the solution.'”

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