Pray For Eli: Family Struggles With Rare Condition

By Lorrie Holmes
For The Dunn Daily Record

BENSON – Eli Godwin is a beautiful blonde energetic 2-year-old boy with an uncertain future. Like most children, he loves hot dogs, pizza and chicken nuggets. Eli often can be found playing with Hot Wheels, splashing in water, jumping on a trampoline or bouncing a ball.

Eli Godwin (Contributed Photo)

At the end of the day, it is no trouble getting him into a bath because it is one of his favorite things to do. At bedtime, Eli is faithful in his bedtime prayers. He also bows his head in prayer before each meal, and if anyone comes to the table late, he insists on someone saying the blessing again.

Eli seems normal. But, inside, his body is fighting a rare disease set to be with him all of his life.

Molecules the body would normally get rid of were collecting on his brain. That happens with Hunter syndrome and the buildup of molecules damages organs, tissues, development and abilities.

The disease requires constant medical attention. But Eli was born during the pandemic. He’s not used to strangers.

“Our little teeny circle is all he’s been around. So when he goes to the doctor, it’s a lot. He just freaks out. It’s been very hard,” said his mother, Heather Godwin.

Not much is known about this disease. Only 1 in 100,000 to 170,000 people, usually males, are diagnosed with Hunter syndrome.

“The scariest thing is that research only began in 2018, and even though they have an enzyme treatment, it does nothing for the mental decline,” said Eli’s father, James Godwin, who works as a nurse.

Hearing a doctor express his condolences for the journey ahead of them, James Godwin felt the heavy weight of this disease. Heather Godwin feels it, too.

“It’s hard seeing the fear in his eyes,” she said. “It’s hard having him go through it and not being able to explain it.

Two-year-old Eli Godwin hugs his 8-year-old sister, Peyton. Eli was diagnosed with Hunter syndrome in December. (Contributed Photo)

“That’s hard,” she said as her eyes welled with tears. “Like watching him do blood work and them digging in his arm and I know that he’s hurt.”

She can comfort him, but not enough to make the pain go away.

Despite all of the happiness this child has, there is a looming cloud over the entire family. Eli has been diagnosed with Hunter syndrome. Doctors noticed that his head seemed a bit large for his age and performed an MRI to discover molecules collecting on his brain.

Symptoms usually begin to appear around age 2. The Godwins, who live in Benson, would like to see more education about the disease. It is important to find it early. The earlier treatment can begin, the better the chances for the child. Current treatments can only help with symptoms and the rate of decline. Treatment will be a lifelong challenge.

Eli has an opportunity to become part of a trial that can help. But the family needs the funds to get him enrolled. Pizza Inn of Dunn is spearheading a fundraiser to raise funds for Eli to become a part of this treatment. On Friday, Pizza Inn on Broad Street in Dunn will host a bake sale and 50/50 raffle to help the Godwin family get Eli into the Denali trial program.

Pizza Inn employees were aware of signs in the community asking for prayer for Eli. The company reached out to the family and offered help.

Eli’s grandmother, Darlene Allen, had yard signs printed at her own expense to display in the community to rouse awareness and support for her grandson’s plight. The signs are scattered throughout Harnett, Johnston and Sampson counties.

Heather expressed gratitude as she stated, “Prayer has been overwhelming. People are stopping to ask about him.”

Pizza Inn and the family are asking the community to support this fundraiser to help change Eli’s life. The fundraiser will take place on Friday from 11 a.m. to 9 p.m.

Hodges Chapel Church in Benson is also organizing a fundraiser for April 2 called Brushes of Hope. Participants can purchase canvasses with outlines of pictures for painting.

Peyton is Eli’s devoted 8-year-old sister. Heather Godwin describes their daughter’s response to Eli’s future as strong and ready to handle the stresses.

“She loves her brother and will do anything for him,” she said.

Eli is the grandson of Junior and Darlene Allen and Marshall and Cindy McLamb.