Columbia County Family Needs Formula To Keep Son Alive
FDA Suspends Distribution Of Special Formula That Keeps Toddler Alive
Posted: 9:51 pm CDT August 6, 2003Updated: 4:59 pm CDT August 8, 2003
UPDATE: A pharmacist contacted News 3 when he saw our story. He's arranged for a case of Ketocal -- at no cost to the family.The pharmacist, who wishes to remain unidentified, is just one of many viewers who e-mailed and called News 3 to offer help.He is trying to find more formula for Tyler Tracy while the family looks for a long-term solution to the problem.News 3 has also learned U.S. Rep. Tammy Baldwin is getting involved in helping Tyler, who would most likely die without the government-suspended formula.Baldwin's office is working directly with the Food and Drug Administration and the Department of Health and Human Services on behalf of the family.We've also received many e-mails and calls from viewers with suggestions on how the Tracy might obtain the formula. We've forwarded those e-mails to the Tracy family.News 3 will continue to update you on this situation.HARMONY GROVE, Wis. -- A Columbia County couple are fighting the clock and red tape to keep their 15-month-old son alive.
News 3 learned about the family's story when the father contacted the station via e-mail.Reporter Toni Morrissey has been investigating the family's heart-wrenching story. The boy's father says they are frantically searching for someone who can help them.Little Tyler has a rare neurodegenerative disorder. The Tracys have found a miracle for their little miracle, but they can't get their hands on it -- ketocal, a formula that provides the diet Tyler needs to keep him alive. The Food and Drug Administration has suspended distribution of the formula that provides a ketogenic diet high in fat and very low in carbohydrates.
"It's the only thing that keeps him going," his dad, Jeff, said. "It's the only thing that keeps him alive. We need it now. We need it now for Tyler because he needs it."Dr. Jaj Sheth said the Tracys are in a very difficult situation.The pediatric neurologist who has treated Tyler says there are alternatives to ketocal, but Tyler has been unable to tolerate them. Sheth told News 3 the disorder Tyler suffers from presents a life-and-death scenario."In children that present at a very young age, typically they have a life span that's limited," Sheth said.The supply of ketocal is down to a week for Tyler now. The Tracys normally get it from a hospital nutritionist, but when the supply ran dry, the Tracys found a Canadian distributor. The formula could be sent to a pharmacist or other third party.
"From there, I'd have to get it into the U.S. on my own either through the mail or bring it over the border," the boy's father said.Smuggling in ketocal for Tyler is still an option, but the family hopes to cut through the red tape and get ketocal like they used to get it.Until then, Tyler's dad will talk to anyone who will listen."Put a spotlight on the issue, try to expedite the process to get it back in production, get it back on the shelves, get it back in our kitchen," Jeff said.
The Tracys say they haven't gotten any answers about exactly why ketocal, manufactured in Great Britain, is no longer available.Tyler's nutritionist told News 3 that as soon as Tyler goes off the special formula his condition could deteriorate quickly.The Tracys have contacted U.S. Rep. Tammy Baldwin for help and hope to get to U.S. Health and Human Services Secretary Tommy Thompson involved, but the clock keeps ticking.
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"It's the only thing that keeps him going," his dad, Jeff, said. "It's the only thing that keeps him alive. We need it now. We need it now for Tyler because he needs it."Dr. Jaj Sheth said the Tracys are in a very difficult situation.The pediatric neurologist who has treated Tyler says there are alternatives to ketocal, but Tyler has been unable to tolerate them. Sheth told News 3 the disorder Tyler suffers from presents a life-and-death scenario."In children that present at a very young age, typically they have a life span that's limited," Sheth said.The supply of ketocal is down to a week for Tyler now. The Tracys normally get it from a hospital nutritionist, but when the supply ran dry, the Tracys found a Canadian distributor. The formula could be sent to a pharmacist or other third party."From there, I'd have to get it into the U.S. on my own either through the mail or bring it over the border," the boy's father said.Smuggling in ketocal for Tyler is still an option, but the family hopes to cut through the red tape and get ketocal like they used to get it.Until then, Tyler's dad will talk to anyone who will listen."Put a spotlight on the issue, try to expedite the process to get it back in production, get it back on the shelves, get it back in our kitchen," Jeff said.The Tracys say they haven't gotten any answers about exactly why ketocal, manufactured in Great Britain, is no longer available.Tyler's nutritionist told News 3 that as soon as Tyler goes off the special formula his condition could deteriorate quickly.The Tracys have contacted U.S. Rep. Tammy Baldwin for help and hope to get to U.S. Health and Human Services Secretary Tommy Thompson involved, but the clock keeps ticking. Copyright 2007 by Channel 3000. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
