Crews break ground on home intended to raise funds to help Jessops, others with terminally ill children

WASHINGTON — Family, close friends, community members and builders gathered Thursday to show their support for the Jessop family at the groundbreaking of the House of Hope, which will help the Jessop children and many other children like them.

Noreen and Lester Jessop with their children, Daron, Aubrey and Angela, at the groundbreaking for the House of Hope in Washington, Utah, July 12, 2018 | Photo by Markee Heckenliable, St. George News

Lester and Noreen Jessop have three children – Daron, Aubrey and Angela – who were all diagnosed with the same terminal illness: pantothenate kinase-associated neurodegeneration. The disorder causes progressive difficulty with walking, coordination, vision, speech and swallowing.

The House of Hope, which broke ground Thursday morning, will help the Jessop children access the funding for a drug that “potentially” reverses a lot of the signs of PKAN. The family found the treatment through two doctors from the Spoonbill Foundation studying the disorder in Oregon.

Read more: Family with 3 kids facing terminal illness finds hope in possible treatment; benefit concert planned

Tim Kenney, a close family friend of the Jessop family and owner of New Trend Construction, helped set up a GoFundMe account earlier this year, which has earned close to $40,000. The Kalamity Benefit Concert for the family in February also helped raise additional funds of $140,000. But Kenney decided that wasn’t enough.

Kenney has known the Jessop family since Lester and Noreen got married, and he became close friends with Lester Jessop when they did subcontractor work together. Kenney said:

When one of your team members has a situation and has something come up with their family, I thought ‘You know what, let’s go help them. Let’s go see what we can do.’

Kenney went with Lester Jessop to Oregon on May 8 to deliver a $100,000 check to the doctors from the Spoonbill Foundation, and he said the looks on the two doctor’s faces were priceless. After that, Kenney and a realtor decided to bring their idea of building a house to fruition.

The Jessop family, friends and New Trend Construction workers break ground on the House of Hope in Washington, Utah, July 12, 2018 | Photo by Markee Heckenliable, St. George News

The costs of building the House of Hope and selling it will go to the Spoonbill Foundation to help the Jessop family – and many other children in the country suffering from PKAN – afford the drug the Spoonbill Foundation is currently working on.

Noreen Jessop said the drug that will help her children is in pretrial stages, and the funding from the House of Hope will help get the drug to a clinical trial stage.

With suppliers and a team of 40-50 subcontractors from New Trend Construction, the team’s goal is to build the house in five months, Kenney said.

“I have a lot of really good people to help us, so I think we’ll get it done pretty quickly,” he said.

The support the Jessop family has received from the community and from across the U.S. has been overwhelming, Noreen Jessop said.

“This community has been so mind-blowing,” she said. “I talk about it with other moms with kids with PKAN around the world, and our community is one in a million.”

Washington City Mayor Ken Nielson also attended the groundbreaking to show his support for the Jessop family.

Lester Jessop with his son Daron, July 12, 2018 | Photo by Markee Heckenliable, St. George News

Noreen Jessop said her son, Daron, started exhibiting symptoms of PKAN at age 1 but wasn’t officially diagnosed until he was 9 last June.

“Daron went through some really, really rough times at the end of last year,” she said, but added that since finding the doctors in Oregon and receiving all the support from the community, he has shown signs of physical progress.

“(People) telling him ‘You’re going to be OK. We’re going to get through this’ has totally changed him. He’s probably been better than he has been in two years.”

The community can donate to the cause by going to the House of Hope’s GoFundMe account.

Email: mheckenliable@stgnews.com

Twitter: @STGnews | @markeekaenews

Copyright St. George News, SaintGeorgeUtah.com LLC, 2018, all rights reserved.

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