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A Look into Jake's World: Lives changed by CHARGE


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Jacob Hartshorne, 31, of Mount Pleasant brushes his fingers across the top of his birthday cake May  14 while laying in the lawn outside his home in Mount Pleasant, MI. A socially distanced party was held to celebrate Hartshorne's birthday.

  


Jacob Hartshorne, 31, laid in a window seat on the east side of his house in Mount Pleasant. 

When the sun peeks through the blinds, it is one of Hartshorne’s favorite places in the house to relax, especially on a cold afternoon.

Caregiver Melanie Haste walked over to Hartshorne and gave him a disco light. He quickly switched it on, and a swirling sea of swirling lights garnered all of Hartshorne's attention. 

"He'll do this in the bathtub before bedtime and sit there for hours if you let him," Haste said. "It really stimulates his senses."

Hartshorne is one in 15,000 people born with CHARGE syndrome, a recognizable genetic syndrome with a known pattern of features.

According to the CHARGE Syndrome Foundation, the syndrome is an abbreviation for several of the features common in the disorder which spell out the acronym: coloboma, heart defects, atresia choanae, growth retardation, genital abnormalities and ear abnormalities. 

The acronym was first used in 1981 as a way to refer to recognized clusters of features seen in a number of children.

Hartshorne's father, Tim, started studying the condition after his child was identified as having CHARGE in 1989. Now, the Central Michigan University professor is considered an expert.

"We have always tried our best to give Jacob a life just like everyone else," Tim said. "Now, he has 24/7 homecare and a bunch of beautiful women looking after him."

Hartshorne's assistance is provided by a team of about 20 caregivers. Many are CMU students interested in careers helping people with mental and physical conditions.

Holt senior Jacob Shuler is the lead caregiver for Hartshorne right now. He said Hartshorne is always teaching the staff important lessons.

"The biggest thing that I've learned from Jake is patience," Schuler said. "With the nature of his cognitive disability, you sometimes have to take a step away and give him some time to process the situation."

Bay City grad student Maranda Richard has worked as a caregiver for four years. She agreed that working with Hartshorne teaches you patience. She said it also has taught her a different way of perceiving things.

“His world is so much different than mine,” Richard said. “Communicating with him and learning his behaviors has been a huge learning process, and it has taught me a lot.”

​Hartshorne’s condition makes him susceptible to coronavirus. Recently, Hartshorne was able to receive his second dose of the COVID-19 vaccine.

His mother, Nancy, said it relieves some stress after worrying about Hartshorne potentially contracting the virus.

Recent CMU graduate Alyssa Bright was the lead caregiver when COVID-19 was first recognized in the United States.

After graduating, Bright began working at an autism center helping kids with autism function in a realistic world.

 I find myself going, "Oh my gosh, I learned this from Jake," she said. "I'm constantly thinking about how I learned things in Jake's world first."

Even though she can't call and talk to him over the phone, Bright said she stays updated on Hartshorne's life by messages from caregivers, texts from Nancy and photos on social media. 

"With COVID-19 and being so far away, updates on jake are really special to me," Bright said. "Jake was definitely my favorite memory about Mount Pleasant (and CMU)."

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