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New Hartford toddler’s fight for discontinued seizure medication gaining federal government attention

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NEW HARTFORD --  A family in New Hartford continues to plea with the pharmaceutical giant GlaxoSmithKline in order to keep their young son’s seizure medication on the market.

In a FOX61 follow up, one-year-old Christian Mumm has gained support from the Town of New Hartford where he and his four siblings live.  A rally for their cause was helped over the weekend and an online petition has been started.  The petition gained over 2,300 signatures in its first three days.

Christian’s story has also recently caught the attention of Congressman John Larson who is now joining the fight to allow the young boy to be able to keep taking the medication, Potiga, which was discontinued at the end of June.

Christian was born with the spontaneous mutation to the gene KCNQ2, which means he suffers from frequent and severe seizures.

“In Christian’s case, who really has a terminal diagnosis and we’re really looking at quality of life and keeping him in the best possible place while we have him,” Erica Mumm, Christian’s mother, said.

Erica explained that quality of life for Christian is best achieved through the medication Potiga, produced by the big name pharmaceutical company GlaxoSmithKline, based in the United Kingdom.

“Potiga has been able to open his world for him, he is vocal, he interacts, he smiles, he’s been able to make developmental gains that only a year ago doctors never intended for him to make,” Erica said.

The company cited one of the reasons for pulling the drug off the market as, “Currently, as few as 1,500 patients with epilepsy are treated with this medicine globally, with numbers continuing to decline.”

For Christian, however, the medication has been one of roughly seven doctors have tried that minimize clusters of seizures and does not cause debilitating side effects such as sedation or moodiness.

“This is an exhausting experience and an experience that parents shouldn’t have to fight for especially when you have a child who is struggling enough,” Erica explained, but added she and her husband are incredibly grateful for the fact that they feel they are no longer fighting this battle alone.

“Due to your reporting, we became aware of the situation.  We now consider ourselves part of Team Christian,” Congressman John Larson told FOX61.  He met with the residents of New Hartford Thursday night to discuss the healthcare reform.  That’s when he met Christian’s parents and learned more about what they’re going through.

“A remarkable family like that needs to be helped it cries out for it,” Larson said.  He went on to say, “It just is so disturbing to me that there is a solution here and all that it requires is a company to say yes they will make available this successful drug that helps this child out.”

The solution the family has been pleading for is for GSK to make the drug Potiga available on what’s called a “compassionate use” basis, which the FDA does allow for special circumstances.

“She is not going to give up and neither will we and we’ll continue to knock on any door and to make any call and go to any lengths that we can to do whatever we can for Christian,” Larson said about Christian’s mom and their efforts on the matter.  He added that his team has reached out to the FDA, to multiple organizations who focus on epilepsy and rare diseases, and to both the U.S. Ambassador to the U.K., to the British Embassy in the Washington D.C. on the matter.  He said they have also begun the process to explore proposing legislation that deals with what he called the issue of “orphan drugs” as a whole.

GSK also released the following statement to us on the matter:

“We care deeply about the patients who rely on our medicines. However, Potiga is not approved for use in children. The safety and effectiveness of Potiga in children has not been established, and there is currently an FDA hold preventing research on Potiga in children. We recognize that any time a medicine is removed from the market it can be challenging for patients, which is why we have been working to support physicians for the past year to help them appropriately transition their patients to other treatments.”

The Mumm’s responded that many medications for severe conditions are not approved for pediatrics because there is minimal testing available due to ethical issues.

Christian has three older siblings and a twin brother.  The Mumm’s are continuing to look into alternative treatments for their son, but say right now they are taking it one day at a time.