Nick and Steph Kaywork were married in Las Vegas by Elvis. Not because the couple loves Elvis, but because Steph’s grandmother does. Plus, the ceremony was livestreamed, so their family could all be there. The Kayworks are problem solvers in this online era. They network to find solutions.
For this reason, their youngest son Donovan was born to the perfect family. The 20-month old has a rare birth defect, lissencephaly, which literally means “smooth brain,” lacking the characteristic peaks and valleys key in a brain’s development.
“He will always be non-verbal,” Nick said. “It has a lot of secondary conditions because the brain is not wired right. He sees a specialist for just about every system.”
There is no cure, but there is plenty to learn about living with the genetic condition. “Our role is to give him as much love, comfort, quality of life, and potential as he can give us.” Nick said. And what he gives is a lot. He coos and smiles, his bright blue eyes dashing about the room. “He is definitely more than his genes.”
Steph attributes his bright spirit to the overflow of love that washes over him. “He wakes up with people smiling in his face. He goes to sleep with people smiling in his face. Every minute in between people are smiling in his face,” she said.
Each of Donovan’s siblings shows their love in different ways. Older brothers Bon, 9, and Tiber, 11, love playing with him. Bon makes him laugh. Tiber is an excellent caregiver and is a second set of hands. June, 6, likes to tell people, “This is my brother Donovan and he is disabled.” Steph said, “she says it bragging. ‘This is my awesome brother.’”
The Kayworks knew early on that they would need more than their kids helping them. With their family in New Jersey and Florida, they are essentially on their own in White Plains, a two-hour drive from Donovan’s team of physicians at Johns Hopkins Children’s Center in Baltimore.
As they scoured the internet for wisdom, they learned about pediatric hospice care and reached out to Hospice of the Chesapeake’s Chesapeake Kids program. “Hospice has given us that family,” Steph said.
Just a phone call away is a team that includes a pediatric nurse, a social worker, a child-life specialist, a pediatric nurse practitioner, a chaplain and one amazing volunteer in Alice Weaver.
“She comes in once a week. She holds him, she sings to him, she loves on him and she feeds him. I have free hands for 2.5 hours,” Steph said. “She has definitely changed our lives for the better.”
Towards the end of the nonprofit’s peer-to-peer #Fortyfor40 fundraising campaign for its Chesapeake Kids program, Nick noticed on social media that they were $800 away from meeting a goal. The Kayworks decided they could reach that goal with their followers, including the Lissencephaly Network, a support group on Facebook.
“We have been talking about Chesapeake Kids for months,” Nick said. “Hospice was helping us. We wanted to help hospice.”
They started the hashtag #AllinforDonovan and asked for people to give via a Facebook fundraiser, raising $800 in less than 24 hours. They upped the goal to $1,000, which was met within a few hours.
Then they decided to go for 40 donors. By the third day more than 40 donors had raised $2,306. Donovan was an important part of raising that money. “His face helps a lot. He’s got a great smile,” Nick said.
So much of how the Kaywork family lives is from a distance, but right there.
Their family, friends and Lissencephaly families may be hundreds or even thousands of miles away, but they find a way to connect.
Which brings them hope, Steph said. “We know every day is a gift and every day brings us one day closer to maybe not having him anymore, but we are super thankful.”
The writer is a communications specialist with Hospice of the Chesapeake.