Man with rare disease in race against time for experimental procedure

Written by MOORE, RUSSELL J.
Thu, Jun 26 08


On a constant basis, Matthew Irving suffers from an unbearable amount of pain that civil people wouldn’t wish on their worst enemies.

In 2003, at the age of 16, Irving excelled at North Providence High School. He was an honor student who participated in the academic decathlon and Science Olympiad, was a certified lifeguard, and was on his way to earning his black belt in Karate.

A bird lover, he hoped to become a veterinarian someday.

But disaster struck when Irving underwent a basic surgical procedure to correct relatively minor problem with his foot. He was born with one leg slightly shorter than the other, and he had a procedure on one foot to correct the problem a few years prior.

Almost immediately after the surgery on his second foot, he felt something wasn’t right.

Three months later, his doctors confirmed what he already knew—something wasn’t right.

They diagnosed him with Reflex Sympathetic Dystrophy (RSD)/ (CRPS) Complex Regional Pain Syndrome which involves chronic, excruciating, burning pain, pathological changes in bone and skin, excessive sweating, skin discoloration, and extreme sensitivity to touch, light, and sound.

RSD is a debilitating and chronic syndrome, which gets progressively worse as time moves on.

RSD has a variety of treatments, all of which have had little or no positive effects on Irving.

At first, Irving dealt with the problem relatively well—though even early on he’s been confined to a wheelchair, as the act of standing became unbearable. Nevertheless, was able to attend school, and eventually received his degree.

He then went on to attend Rhode Island College, but was forced to drop out a year ago when the pain became too severe.

As time passed, his condition worsened. At this point, he’s 21, and the pain he deals with on a continual basis is excruciating.

Desperate, and with no options left in the United States, his parents, Nancy and Russell Irving, are hoping to send Matthew to Germany, just outside of Frankfurt, where he will have an experimental treatment not yet offered in the United States, because it isn’t yet approved by the FDA.

The treatment involves putting Matthew into a medically induced coma for anywhere between 5 and 19 days. The result, according to Russell Irving, Matthew’s father, will be a “rebooting” of his system. That, he said, would give Matt at least 3-5 years before the symptoms of RSD return.

In the meantime, the Irvings are hoping scientists will find better treatments, and perhaps a cure for the condition.

The problem, said Russell Irving, a programmer for the state, is that their insurance company won’t cover the costs of the trip. Similarly, the company hasn’t covered many of their son’s treatments, forcing them to pay out of pocket.

“We’ve maxed-out all of our credit cards and re-mortgaged our house three times trying to help him. At this point, I can’t produce for him anymore but what I can do is spread the word in any way possible,” said Russell Irving.

And timing has also become a very sensitive issue. The rules of supply and demand are stacked against Irving. While, relatively speaking, very few people have his type of disease, there are even fewer still specialists to treat it.

Therefore, the German hospital, which administers the treatment has a strict waiting list, and deals with logistical and time constraint issues.

At this point, Russell Irving said, the German hospital could call at any minute and ask Matthew to come to Germany for the procedure.

If the family doesn’t have $75,000 to pay for the treatment, Matthew would have to be placed on the back of the list. Irving said that would be devastating for his son—who may not live that long.

They’ve received donations of as little as $1 from individuals with notes saying “this is all I’ve got.”

Last weekend, a group of North Providence high school students hosted a car wash, which netted close to $5,000.

In sum, the family has raised over $40,000 thus far, but is still far short of their target.

“I believe in my heart we can get him to Germany. This is going to be a story about the community of Rhode Island rallying around him. If someone could see what’s inside of him they’d understand,” said Russell Irving.

“But the timing is so critical at this point,” said Irving.

“This is his only option left. He’s gone through everything he could in America, and he deserves this opportunity. He’s a young man with so much to offer.”

Those who wish to help the Irvings can do so by visiting his website There, donations can be made by online, and additional information is available on where to send donations by mail.

Click Here For The Original Article Online.



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