Feature Issue on Engaging Communities Underrepresented in Disability Research

LaTrieva, Chloe, and Leonard Boston share a light moment at home.

Being a retired U.S. Navy man, I kind of figured I could handle Chloe’s needs related to her disability. Chloe is 13 and has Angelman syndrome, a genetic disorder causing developmental delays, intellectual disability, and seizures, among other issues.

I had a lot of pride and part of me still feels the pressure to handle it all on my own, but as parents we came to understand the importance of getting involved with the various organizations dedicated to families in our situation, such as the Foundation for Angelman Syndrome Therapeutics (FAST) and Parent to Parent USA.

It was through those networks that we first heard of a research study to test a new drug for Angelman syndrome back in 2020. We considered the long history of African Americans and research studies, including the Tuskegee airmen. As a result of that, our community often isn’t part of the latest research that is going on and we have a tendency not to even be aware if research is being done on a particular topic. My wife, Latrieva, worked in the foster care system and now is with a nonprofit organization, so we have seen a lot and we are both open-minded about trying things instead of saying no immediately.

Even in the Angelman community, I can tell you that Latrieva and I go to these fundraisers and other research events and we are often the only people of color in the entire event – families, researchers, anybody. Because Angelman is found through genetic testing, and genetic testing is very expensive, it is believed that many people with the syndrome are just misdiagnosed with autism or other disorders. That’s a problem because a child with Angelman may not be walking at age 5, but may walk at 7, so getting the right therapies at the right time is important.

We never put Chloe in a wheelchair and I was even opposed to getting a designated parking sticker, because when she did begin walking, I wanted her to develop her strength. It’s just about learning different approaches because you learn more about the individual when you have a correct diagnosis.

We also resisted starting her on a tablet at age 4 because we wanted her to develop her ability to communicate without an assistive device. We started with an adaptation of sign language and verbal and physical cues.

In 2020, we started a drug trial, and after about 60 days, she started showing some signs of improved communication skills.

And then when we introduced the tablet, in about a week she was already scrolling through movies and navigating the tablet on her own. She started using it for communication, and she could indicate daily wants and needs. Today, Chloe navigates a cell phone, a tablet, and two televisions simultaneously. She watches educational programming that she selects on her own.

A lot of this progress we attribute to the drug, but officially the drug was deemed a failure. She’s not on it anymore, but hasn’t had a regression. It was deemed a failure because the results were based on parent reporting and even parents who were given the placebo reported progress. We were given the actual drug, I learned later, but I understand that parents want to believe that progress is being made. Some of the parents petitioned to keep taking the drug, but as of right now, it is not in use. There are several more drug trials coming up in the future, though.

When I think about how race plays a role for Chloe, I do know there are differences for her and that it still plays a significant role for all of us. At least one of my other adult children experienced racial profiling in an Illinois fast-food restaurant just recently. Racial inequity is still going on, so, yes, it will play a role for Chloe as well, and maybe even a stronger one because of her disability. Hopefully, we can give her enough tools and training so that she can live her best life even if a cure never happens. And believe me, I realize not everyone has these resources. All Black and Brown families should have access to the latest research and therapies.

One of the typical side effects of Angelman is uncontrollable laughter, even at inappropriate cues, but Chloe never had that aspect. If it’s funny, she laughs, and she is now probably the comedian of the family because she communicates her wishes pretty clearly. If she doesn’t want you in the house, she’ll grab your coat and show you the door.

Before she has even become a teenager, she has introduced us to a community of people who just want the best for their children. She introduced us to people we would never have known who are now part of our inner circle. And that’s the joy of it.

Watching her develop over the years, we think a lot today about what she’s going to be like as a teenager. How will she be as a woman? Even though we don’t want her growing up too fast, the anticipation really makes us think about what this child is going to accomplish. If she could verbalize her emotions, I think she’d say she’s had a good life up to this point, but that she wants to be on her own. And she’d be competitive. She’d say, “I’m capable of doing everything and anything I want to do. I love my siblings, but I’m better than them!”