St. John family seeks signatures for son's health

2014-03-23T18:00:00Z 2014-03-24T22:17:40Z St. John family seeks signatures for son's healthVanessa Renderman vanessa.renderman@nwi.com, (219) 933-3244 nwitimes.com

ST. JOHN | If nearly 270,000 Americans can support an effort to deport Justin Bieber, surely a fraction can sign a petition to help sick boys.

The Kammers hope so.

The youngest member of the St. John family is 3-year-old Greyson Kammer, who was diagnosed in November with Duchenne muscular dystrophy, a condition that gradually weakens muscles to the point that walking, breathing and heart beats become impossible.

Odds are, Greyson will need a wheelchair as a teen and will not live past his early 20s. But, there is hope.

A drug called Eteplirsen, used in clinical trials, has proven effective in slowing progression of muscle weakening.

The Food and Drug Administration has not sent the drug through its accelerated approval process, even though it has shown zero serious side effects on boys who have taken it in trials, said Greyson's dad, Jim Kammer.

Through leaflet distribution and Internet campaigns, the Kammers are helping spread the word to the region and to the country about an online petition.

If 100,000 people sign by Friday, the White House will respond.

"If a petition gets enough signatures, White House staff will review it, ensure it's sent to the appropriate policy experts and issue an official response," the White House website states.

Past petitions garnering a response include an initiative to deport pop star Justin Bieber and revoke his green card, a request for the White House honey ale recipe and a request that the U.S. government formally acknowledge an extraterrestrial presence engaging the human race.

The White House has addressed a slew of more grounded requests, such as a comprehensive approach to Wall Street reform, reducing gun violence and digitizing federal public records.

The Duchenne petition urges the FDA to "use the accelerated approval pathway for approval and access to safe, effective therapies for Duchenne Muscular Dystrophy, the leading genetic killer of children that affected one out of every 3,500 boys born in the United States."

Greyson's mom, Dessie Kammer, said getting the attention of the White House can only help.

"It's just asking the FDA to stop stalling," she said.

Every day that passes means more muscle weakness for boys with the condition. 

"We're dealing with such a short time span," Jim Kammer said.

Even Greyson's older brothers, twin 12-year-olds Hayden and Jordan Kammer, are helping. They distributed fliers to classmates, urging their parents to sign the petition.

In the meantime, the Kammers are making some lifestyle changes, including moving to a one-level home because Greyson cannot climb stairs.

He cannot jump, and his gait is not like other children's. He has thicker calves and thighs.

To get off the floor, he walks his hands toward him and up his legs to stand upright, something called Gowers' sign. It is a key indicator of Duchenne's, his mom said.

"You never know how fast the disease will progress," Dessie Kammer said.

Time is ticking, not only for the petition but for Greyson's health, his parents said.

"We're parents on a mission," his dad said.

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