Barstow mother raises money to prepare home for son’s heart transplant


By Beau Yarbrough, The Sun

POSTED: 03/09/14, 7:28 PM PDT |

Barstow >> Caleb Lucas needs a new house.

The 7-year-old Barstow boy’s small Muriel Drive home is his entire world: Caleb was born with hypoplastic left heart syndrome, which has left him, essentially, with the right half of his heart doing the work of a whole heart.

He’s already had nine open-heart surgeries, a rebuilt aorta and a shunt. Those, in turn, have led to other surgeries, heart attacks and strokes, which have left him with the cognitive ability of a 2-year-old.

Caleb also has a seriously compromised immune system, which keeps him indoors, away from the germ-filled world outside. He attends school at Cameron Elementary School, a tenth of a mile away, only via Skype, as the other children in his class could infect him with any number of minor illnesses that could prove threatening to him.

He’s been attending class via the Internet since October.

It’s going “great, oh, my gosh. He has come so far,” his mother, Cathyleen Williams, said. “He’s actually doing two- and three-word sentences now, he’s comprehending a lot more. He’s grown tremendously. Skype has been just amazing for him; I’m so glad.”

His heart will eventually give out. And that’s why he has to move:

The house he shares with Williams, who serves as his full-time caregiver, relying on income from the Social Security Administration and San Bernardino County, is cooled by a swamp cooler, a popular choice in the arid High Desert of Southern California.

But that’s a problem for Caleb.

“The swamp cooler poses a bacterial threat and a mold threat once you get a heart transplant,” she said. “That’s where we’re headed: The only thing they can do to fix Caleb is a heart transplant.”

The relatives who own the Muriel Drive house refuse to allow Williams to install an air-conditioning system. Triple digit temperatures are the average high temperature in Barstow in July and August, making some sort of cooling system a necessity for the pair.

“I’m being pro-active and getting a suitable home for him,” she said.

Her goal is to raise about $20,000 as the down payment on a home in Barstow, where central air is cheaper and drives up the price of a home. The high down payment will allow her to make low monthly payments on a small government income.

“I just need to make sure that whatever home I move into, I can afford it,” she said.

She’s raising money via crowd-funding site GoFundMe.com, and holding fundraisers in the High Desert, including raffling off donated purses and a weeklong stay at a Palm Springs hotel. Friends are selling T-shirts, jewelry and candy and donating the proceeds to his house fund.

“I’m going to do whatever I have to do to make sure that my boy has every opportunity for life,” Williams said. “I don’t want to make sure that something as silly as me not having an A/C unit to stop him from having a chance at life.”

There’s still a long way to go: As of March 6, the GoFundMe campaign had raised less than $200 of the $20,000 needed, but Williams is staying optimistic:

“I’ve actually started packing up my house; I want to be ready.”

For more information on Caleb and Williams, visit GoFundMe.com/6eqkzw or search for “Fight for Caleb’s Classroom” on Facebook.

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via Barstow mother raises money to prepare home for son’s heart transplant.

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