Cranford boy recovering from nearly fatal allergic reaction

By GREG MARX

RECORD-PRESS

CRANFORD — Patrick French is 38 pounds and 41 inches of energy.

Sitting in a stroller or kitchen swing at his Wall Street home, Patrick smiles gleefully at family members and visitors, throws his toys around the room, and generally bounces about as fast as his limbs will allow him.

There are signs Patrick’s development has been slowed — at nearly five years old, he still wears a diaper and uses a pacifier, his hand-eye coordination is imperfect, and he does not yet speak or walk alone.

But there are few indications that not along ago, according to his mother Jacki, being in Patrick’s presence was “pretty much like having a dead child in the house.”

But that was the reality Jacki, her husband Tim, their son Sean, now 11, and daughter Kathleen, 8, faced in April 1997. It was then that a six-month old Patrick suffered a massive neurological collapse brought on by an allergic reaction to the DPT (diptheria-pertussis-tetanus) vaccine.

Though Patrick showed warning signs such as asthma and ear infections, “it didn’t really seem important at the time,” Jacki says now. “I trusted (the pediatrician) with everything.”

“I’ll never forget that day thinking I was protecting my child, and I was helping kill him,” Jacki says.

She urges other parents to become educated about the warning signs for vaccine reaction, and notes Patrick became ill in response to a pertussis vaccine approved as a safer strain by the Department of Health and Human Services in 1997.

The vaccine produced encephalitis, a swelling of the brain and nervous tissue that affects only 1,500 people a year in the United States. The disease caused Patrick’s body, in effect, to shut down. He lost his sight and motor skills, his body would not accept nourishment, and his immune system could not rid his body of toxins.

“He was a rag doll,” Jacki says. “Every sensation was gone, other than pain.”

Conventional treatments failed. Then, on Oct. 8, 1999, Patrick’s third birthday, he entered a free medical trial at Cornell University Medical Center in Manhattan. Twice a day, Patrick entered a hyperbaric oxygen chamber, a closed tubes that facilitate the flow of oxygen to his tissues. The oxygen flow helped the damaged nervous system repair itself; soon he was demonstrating improved sight, motor skills, and responsiveness.

Patrick was far from out of the woods, however. Encouraged by his progress, his parents enrolled him in nursery school. But after only 19 days, “we thought he was going to die,” Jacki says.

While his nervous system was being repaired, Patrick’s immune system was still fragile, and he was still unable to eat most foods. In June 2000, at 3½ years old, Patrick weighed only 21 pounds.

At that point, his family again turned away from conventional treatment, enlisting the aid of the holistic Aloha Clinic of Short Hills. The clinic put Patrick on a rice formula — one of the few protein-rich foods his fragile body can tolerate. That formula, along with continued hyperbaric oxygen treatments, dramatically improved Patrick’s condition. Though he still suffers from post-encephalatic encephalopathy, he has 60 percent improvement in his vision and is even beginning to initiate steps. Patrick is so lively in his kitchen swing — for which he is the test baby — that he has broken two of the bungee cords that support the seat.

“This is a dream come true to us,” his mother says. “This has changed our life back to a happy family again. We’re smiling because we’re not crying anymore.”

But the years of struggle have exacted both a psychic and financial toll on the family. Because the no-longer-free hyperbaric oxygen treatments are not considered standard for people with Patrick’s condition, they are not covered by the family’s insurance.

Neither is the costly rice formula, which Jacki says is “the only reason he’s alive,” or the specially-designed braces and toys that are helping Patrick regain his motor skills.

Out of nearly $100,000 in direct and indirect medical costs in the past year, Jacki says, the insurance company covered about $55,000.

And because caring for Patrick is a full-time job, Jacki has had to leave the paid workforce. The family even drove to Florida in the past year, forcing Sean and Kathleen to miss 20 days of school, because the oxygen treatments were less expensive and their grandfather, a Florida resident, could offer free day-care.

In response to the family’s plight, a group of township residents — including Pilar Dalia, Norm Albert, Sue Judge, and the Aschenbach family — many of them affiliated with Sean’s Cranford Gators swim team, have helped found and run the Patrick French Foundation.

Through fund-raising events like a silent auction and a wine and cheese party, the foundation, begun in April 2000, raised about $23,000 in the last year — enough, Jacki says, to cover co-payments on medical bills.

“If it wasn’t for the foundation, we would lose our home,” she adds.

Ralph Englese, a co-founder of the foundation, said the organization works because it “groups people’s talents. People have gotten together to help out in their time of need.”

Englese said in addition to those who do the organizing and legwork for fund-raising events, attorneys, accountants, and other professionals have donated their time.

The work of the foundation, Englese said, has “allowed Patrick and his family to try a different approach,” and ultimately to “see less pain and more joy in the recovery stages.”

Other organizations have lent their assistance. Cranford Cares for Kids has offered valuable financial assistance, though Jacki says she does not want to “monopolize” their funds. And the school district provides three therapists and a teacher who visit Patrick at home; Jacki says the district has done “a phenomenal job finding people who are qualified.”

And the community as a whole has rallied around Patrick. “People I haven’t seen in 30 years have called and offered help,” Jacki says. “It’s amazing. I know a lot of parents (in our situation) who don’t live in a town like this.”

Perhaps most moving is the support offered by Patrick’s siblings and their peers, like Sean’s friend and teammate Chris Judge.

In addition to participating in a Swim-a-Thon fundraiser, Sean and Chris “have spent the past couple weeks literally all over Cranford” raising funds for Sean’s brother, says Jacki. “Their lives have been altered forever. They’ve become fine gentlemen at a very young age.”

The full extent and limits of Patrick’s recovery are still unknown. Even with the success of the foundation and the planned construction of a less-costly hyperbaric oxygen chamber in New Jersey, the treatments remain expensive. Jacki says the plan for the winter calls for Patrick to receive less-intensive treatments over a longer period of time, to make the funds last.

All Jacki knows for sure, she says, is “what we’re doing now is working for him… If he could walk and go to school (within a few years), that would be a godsend.”

If Patrick’s current condition is any indication, the schools should start making room.

ALL INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR LEGAL ADVICE. THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.