Community embraces boy with rare disorder

Amy Adamson, left, said she is grateful for the affection and treatment her 9-year-old son Eli has received from the Baldwin community. Eli, hugged by his 13-year-old brother Blake, is one of two children in Kansas diagnosed with the genetic condition, Pitt-Hopkins Syndrome.

Last week, 9-year-old Eli Adamson thrilled his mother with the answer, “yeah.”

Amy Adamson said the exchange started when Eli put a key chain of communication picture cards on her lap.

“I said, ‘Are you asking me to watch a movie?’ He said ‘yeah,'” his mother said.

Although Eli isn’t completely nonverbal, the words he does share with his family are often non-sequitur phrases. The incident with the key chain was the second time in recent weeks he’s replied with an appropriate one-word answer to a question.

“There are little things every day that happen with that kid, and they are just little miracles,” Amy said.

She’s grateful for those moments, but Amy also knows those miracles grow from the hours of work that counselors, therapists and teachers provided Eli and the affection given to him from those at his school, the family’s Lighthouse Baptist Church and the Baldwin City community.

“The people in our community, they treat Eli like a little celebrity,” she said. “We are so blessed to be living in a community that is so compassionate.”

“When we went to the Maple Leaf Festival carnival, my brother was amazed at all the children and adults who said hello to Eli, who talked to Eli and engaged with him.”

In the latest example of that compassion, the Baldwin City Lions Club gave a specially designed bicycle to Eli on June 27, his 9th birthday, Amy said.

Genetic testing revealed in December 2010 that Eli has Pitt-Hopkins Syndrome, a rare partial or total absence of the TCF4 gene. There are only two children in Kansas diagnosed with the syndrome and just 120 in the world.

That diagnosis came more than six years after 9-month-old Eli was first referred to Kansas University Hospital and Children’s Mercy Hospital subsequent to Amy and her husband, Scott, noticing he wasn’t as active or engaged as a normal baby. The doctors there couldn’t help much, Amy said, and she and her husband passed on testing at that time because they didn’t want to put Eli through all the “poking and prodding” that genetic testing involved.

It was a sound decision because the test for Pitt-Hopkins Syndrome wasn’t developed until 2007.

Instead, the family started working with a succession of agencies, such as Douglas County Infant and Toddler Services, Parents as Teachers, the Baldwin City school district and East Central Kansas Cooperative in Education. They worked with Eli and the family at home and at school to overcome limitations his parents now know are associated with the syndrome, such as mental impairment, weak muscle tone and vision problems.

“The doctors we have interfaced with are minimal compared to the counselors, therapists and para-professionals that have helped him daily since he was 12 months old,” she said. “They were focused on his development. As it turned out, that was the right thing to do.”

“The school district has been extraordinary. I never got the feeling my child was a square peg trying to be fit in a round hole. His special-education teacher, as well as his therapists, get very excited about his success and progress.”

His schoolmates further enrich his educational experience, Amy said.

“His peers are phenomenal.” she said. “His teacher told me his classmates argue over who gets to sit next to Eli or help Eli.”

Betsy Ulrich, Eli’s special-education teacher at school, said his schoolmates respond to Eli’s personality.

“I think everyone Eli meets, he somehow has the ability to put a smile on their face,” she said. “The strength of the relationship Eli has formed with is class is amazing.”

Ulrich gives Eli’s family credit, too. His 13-year-old brother, Blake, has a special bond with Eli, and his parents work very well with his therapists, she said.

Although his diagnosis didn’t change the approach to Eli’s therapy or individual education plan at school, it has been good for the family.

“We can now interface with families with other children who have been diagnosed,” Amy said. “When we got the diagnosis, we went on Google and found pictures of children that look like Eli. We thought immediately, ‘Hey, these are Eli’s people.’

“We’re one of two families in Kansas with a child with Pitt-Hopkins. We’re going to get together with them soon. That’s a really nice thing.”

The diagnosis also gave her peace of mind, Amy said.

“It let me know I didn’t do something wrong during my pregnancy,” she said. “I had a huge sense of guilt lifted from me. There wasn’t anything I could have done to change the way he was supposed to be.”

She makes an effort to live in the moment and not dwell on the future, Amy said. But when she does look ahead, she sees Eli continuing to benefit from the good side of human nature.

“My dream and desire for him is that he will be around caring and compassionate people his whole life,” she said.