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Messages Of Hope



 written by JOHN J. BURO  

WEST LONG BRANCH – The man behind the roundtable spoke clearly and deliberately.  There was no mistaking his words and, if ultimately proven true, the treatment known as hyperbaric oxygen therapy, or HBOT, just might be to Duchenne Muscular Dystrophy, or any other neurological disorder, what Jonas Salk’s “killed” virus vaccine meant to those afflicted with polio.

 To understand just how strongly Jim Raffone believes in HBOT, one only needs to hear of his son’s progress since the hyperbaric chamber was first delivered to their Manalapan home in 2014.  

Initially, Jamesy was cajoled into entering the 3’ x 8’ unit, thinking it would be used to treat his father’s own medical concerns.  Ultimately, the tyke warmed up to the idea, particularly when he was able to keep himself preoccupied with video games and other toys while inside it.  The soon-to-be nine year-old later dubbed the chamber as ‘His Rocketship.’

The chamber, which was originally intended to help regulate the pulmonary systems of military deep-sea divers who surfaced too quickly, is now viewed as a potential life-saver for another segment of the population: those afflicted with neurological disorders.  

Here’s the skinny on its operation: with science having already proven that cells have a greater chance at self-reparation when exposed to a greater oxygen content, the concept of funneling pure air through a compressor, split by two filtration systems, required a conduit to make it all happen.  Such a device is the hyperbaric chamber, which is equipped to provide therapy for a wide array of medical conditions.

“At JAR of Hope,” Raffone stated, “we would like to see changes in the trajectory of this disease.  Whereas the disease puts children between the ages of nine and 12 in wheelchairs, we hope children who use the chamber, will never have to use a wheelchair.”

There are two underlying issues with that thinking.  The first is –surprise!– cost: a brand-new chamber, which runs off a 110-watt receptacle, can cost as much as $20,000 for home use (or $2,150 per month to rent), plus electricity.  By contrast, a one-hour HBOT session is approximately $100 per hour at a private clinic and a minimum of $1,250 in a hospital.  Medicare will defer these expenses, but only if they relate to any of its 14 approved conditions.  

For those fortunate enough to have one on the premises, the other consideration is square footage.

Raffone, who founded JAR of Hope ten months after Jamesy’s diagnosis on September 13, 2013 (a Friday), had previously owned both a fitness center and a contracting business prior to his son’s birth.  In the cruelest way imaginable, Duchenne has collided with both his livelihoods.

“In a perfect world -if I had the space and the finances- I would’ve built a separate room.  But, unfortunately, we’re not in that situation, so we’ve had to remove some personal belongings in our basement to make room for this unit (gifted by Dr. David Dornfeld, a Middletown, NJ specialist in Family Practice) to adequately treat Jamesy on an every-other-night basis.

“Containing him during the day when he was four-and-a-half, five years old was tough,” remembers Raffone.  “It was much easier for him to just fall asleep there.  Jamesy can bring anything in there (that isn’t combustible), and it will keep his mind off what he’s doing.  Right now, Jamesy gravitates toward the chamber, and has got a nice routine down.”

Oxygen therapy, already known to heal sports-related injuries more quickly, has also aided patients with Autism and Attention Deficit Hyperactivity Disorder (ADHD), as well as other neurological disorders, “It’s safe and effective,” attests Dr. Dornfeld, “and I’ve been using hyperbaric chambers since 2005.”

In any case, medical guidance is an absolute necessity.  

With many different models (hard/soft shell, one/two people) to choose from, selecting a unit becomes preferential -like test-driving a car.  Raffone looked at the variables and, figuring there would be times that Jamesy might want company, opted for a soft container, which provides 1.3 ATA (Atmosphere Absolute Pressure) and is recommended for home use.

“It’s out of the norm to have a chamber in the house,” he said.  “Not everyone knows what it is, and to see one there would be an oddity.”  Perhaps as odd as having a child with DMD in the first place.  

But, as Raffone pointed out, the unit isn’t just for those who are ill.  “I would most certainly advocate its usage for a healthy individual, because it could help the cardiac and pulmonary function.  For an athlete, it can increase the rate of your body’s ability to repair itself, on a cellular level, and assist in reducing inflammation across the board.

“There have been occasions that I’ve given more than I should have while working out (his own medical chart lists two herniated discs and tears in his ACL and meniscus, as well as a treatable heart ailment), so I am far from without pain.  If I go out and run 20 miles, I will find myself in the chamber that night for sure –with or without my son.”

As Raffone doesn’t know of any downsides to HBOT, he remains confident that any methods which increase circulation and decrease stress in the body, all while eradicating inflammation, will co-exist with a hyperbaric chamber.  

There’s nothing in the limited data to suggest that either moderate or long-term use is harmful -and, with good reason.  Jamesy Raffone is doing the unthinkable. Like the earliest astronauts, he sets a new precedent with each foray in his rocketship.

“That’s part of the reason we started this study at the University of Minnesota.  There isn’t a child in the history of HBOT who has Duchenne, that has been in the chamber as consistently.  The standing protocol is that a child should stay in there 60-90 minutes at a clip, twice a day, with a four-hour respite in between.”

Whereas, the youngster’s orbits generally last between seven and eight hours.

“To date, there are no ill effects,” Raffone updated.  “Comparatively speaking, DMD-afflicted children of the same age, have already lost ambulation.”  Meaning, wheelchairs are both their present and future.  There’s no walking again, merely because the muscles will slowly degenerate.

“However,” Raffone added, “I firmly believe that even a child in a wheelchair will have improved cardiac and pulmonary function, and that the disease can be stopped in its tracks -or, at least, slowed down.”

There’s another belief that is prevalent.  It’s the one where the parents of those children have been misinformed along the way and, as such, have lost all hope.  There could be help right down the road, and some families wouldn’t know it.  In a world where knowledge is power and not knowing is often the difference between life and death, Raffone has become that life preserver.    

His DNA -and battered body- won’t allow him to give up on his child’s life, when many more families, some affluent, already have.  In every sense, he has given hope to the hopeless and renewed life to the lifeless.

And, a voice for those who are silent.  

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