Jayden Georges, 4, of Port St. Lucie is taken care of Thursday, Oct. 5, 2017, by his father, Rene Georges, at their home on Seaside Road in Port St. Lucie. Jayden suffers from a rare genetic disease, Epidermolysis Bullosa (EB), which causes painful blisters all over his body and in his mouth and esophagus.
Nancy Passeri fell in love after her very first Uber ride.
Not with the driver, but with his 4-year-old son.
Passeri, of Port St. Lucie, was headed to the airport for a trip to New York.
She couldn’t help noticing the photographs on driver Rene Georges’ dashboard. They showed a small boy wrapped in bandages like a mummy.
Georges said the pictures were of his son Jayden, 4. And then he explained the bandages.
Jayden was born in 2013 with Epidermolysis Bullosa, a rare, inherited genetic disease which causes severe skin blistering both outside and inside his body. There is no cure and, without powerful narcotics, Jayden would be in continuous, excruciating pain.
EB is the result of a defect in anchoring the outer and underlying layers of the skin together. Sometimes referred to as “Butterfly children,” EB kids have paper-thin skin (like a butterfly’s wings) that is easily torn by the slightest touch or abrasion.
There’s always the risk of serious infection if that happens. Jayden spends most of his time in his bedroom. He must be bathed and have his blisters (many the size of half-dollars) popped and drained. Then he must be bandaged to prevent further injury. It’s a grueling four-hour process every day.
Jayden’s mother, Milouse Laguerre, works nights as a surgical nurse at Martin Memorial Hospital in Tradition. Her husband no longer drives for Uber. He has become Jayden’s full-time caregiver since the family had problems with outside hired help.
One nurse stole Jayden’s morphine-methadone mixture for her own use.
Both parents discovered they carry the genetic mutation that causes EB. Yet there’s never been any family history of the disease.
“We were told it could have happened 30 generations ago,” Laguerre explained.
Georges and Laguerre also have a daughter, Janaiah, 7, who has the EB genetic trait but displays no sign of the disease.
Laguerre recalled the anguish of not being able to hold Jayden for three weeks after he was born. Jayden spent a month in neonatal intensive care in a Miami hospital before being allowed to go home.
Jayden’s lesion-riddled skin resembles that of a burn victim. Huge scars from the blisters cover his entire body and even extend inside his mouth and esophagus. He cannot eat normally and has a feeding tube inserted in his stomach.
All Jayden’s food, vitamins and medications are administered through the tube. The only thing he takes by mouth is water.
“Which he loves!” Laguerre said. “He’s always asking for more.”
While Laguerre has health insurance through her job and buys secondary insurance to cover Jayden’s medications, her nurse’s salary means she’s ineligible for financial assistance from the government.
It’s a constant struggle making ends meet on one paycheck, Laguerre admitted, but they are doing it.
What she and Georges are unable to afford are alterations needed to make Jayden’s bedroom handicap-friendly. They’d like to add a wheelchair-accessible doorway and ramp, specialized hydrotherapy equipment and a wheelchair-accessible minivan to transport him.
That’s where Passeri comes in.
Since meeting Jayden and the family, Passeri has been a frequent visitor in their home and is busy with fundraising efforts.
She helped create a brochure about Jayden to solicit donations through a PayPal account.
And Passeri is working on a wine-tasting fundraiser Oct. 27 at Bottle Shock in St. Lucie West to help defray some of those equipment and remodeling expenses, not to mention the cost of taking Jayden to see specialists in Cincinnati once a year.
Caring for Jayden takes an incredible toll on both parents. How do they cope?
Laguerre admitted suffering from depression and anxiety; she often has trouble sleeping.
“I have no choice. I am the parent, and I have to do it,” she explained.
Two years ago the family moved from Miami and their large extended family. They haven’t been able to make many new friends here. They cannot go on vacation or even to a movie.
Georges is easygoing, a gentle giant who has an incredible rapport with Jayden as he cuts off dead skin and wraps the boy in bandages. How does he cope with the stress?
“I just take a deep breath and smile,” he replies, grinning from ear to ear.
Laguerre said, “I’ve been a Catholic my entire life. It does make you question your faith. You ask yourself ‘Why me?'”
What does the future hold?
Jayden is home-schooled now, but is scheduled to attend West Gate K-8 school as soon as teachers and aides can be trained in his daily care.
“I’m not sure how school will be,” Laguerre said, “but he’s very eager to learn. He’s pretty excited about it.”
Despite his physical pain, Jayden is a happy and friendly kid, who constantly bounces back and forth on his bed. Once his wound care is completed, he can’t wait to get back to his tablet to watch videos.
Spending a couple of hours with Jayden was bittersweet. He’s such fun to be around, but my heart ached at his pain and disability, at the unfairness of it all for someone so young.
Children with EB tend to live short lives. Laguerre said several in the intensive care unit died during Jayden’s 30-day stay there.
I had a desperate urge to hug Jayden, to somehow make him feel better through human contact. Yet I knew that was the last thing I should do — such a simple act of affection could rip off his skin and leave him screaming.
As I left his room it was hard to forget those big, brown, loving eyes. Jayden hates goodbyes, and so did I.
Anthony Westbury is a columnist for TCPalm. This column reflects his opinion. Contact him at 772-221-4220, email@example.com, or follow him @TCPalmWestbury on Twitter.
How to help
Send PayPal donations:firstname.lastname@example.org
Winetasting event: 6-8 p.m., Oct. 27 at Bottle Shock, 1707 N.W. St. Lucie West Blvd., Port St. Lucie. Donations at the door will benefit Jayden Georges.
Read or Share this story: http://www.tcpalm.com/story/opinion/columnists/anthony-westbury/2017/10/09/anthony-westbury-four-year-old-rare-skin-disease-needs-help/727009001/