Thursday, July 09, 2009

Toddler suffering from rare seizure disorder fights for her life!

Chances are you haven’t heard of Propionic Acidemia but for one local family, their lives have become about battling it, including raising money to end the disease that threatens the life of a little girl.

Gwen Mouat, is the daughter of Jennifer (Buck) and Tom Mouat, formerly of Pomeroy and granddaughter of Bob Buck of Pomeroy. Gwen is one of four PA survivors under the age of four who are being treated for PA at Nationwide Children’s Hospital in Columbus. This Saturday, Gwen’s family is organizing a corn hole tournament to fight the rare disease. Registration begins at 11 a.m. with tournament play beginning at noon at Bun’s Party Barn in Pomeroy.

The tournament will be a double elimination, four bracket setup. The entry fee for a two person team is $20. Prizes will be awarded at the tournament with the first place team winning $200 and second place team receiving $100. Pre-registration is recommended due to the 32 team limit. There will be prize drawings and 100 percent of funds raised will go to the PA Foundation to fund “desperately needed seed research in order to gather data that will help obtain larger National Institute of Health grants,” according to Gwen’s family.

Individuals with PA cannot break down essential parts of protein and some types of fat due to a non-functioning enzyme. Without the enzyme, amino acids are only partially processed, which causes propionic acid to build-up in the bloodstream. This in turn causes build-up of dangerous acids and toxins, which can cause damage to the person’s organs. Even with intense management, PA can damage the brain, heart, liver, cause seizures and delays to normal development. The median survival age is three years.

For Gwen, who is now three years old, her battle with PA began when she was just three days old and has since dealt with an array of health issues caused by the constant stress to the central nervous system and other major organs. Throughout her life, she will be fed a highly specialized and ever-changing formula through the gastrostomy tube in her belly due to special dietary needs and food aversions, which are common in PA patients.

Beating the odds, Gwen has fought through the 50-plus hospitalizations that have followed due to a variety of reasons from a common cold to life-threatening infections. Jennifer says her daughter’s exuberance is a testament to strides that have been made in treatment for PA even since her birth. Her apparent good health, while a blessing, is not taken for granted. Gwen’s parents know that any single virus or trauma could take her life tomorrow, which makes every day she’s still here a “sweet gift.”

Submitted photo -  Gwen Mouat (pictured) is fighting Propionic Acidemia, a rare, life-threatening disease which her family is raising money to fight with a corn hole tournament held on Saturday in Pomeroy.
Submitted photo - Gwen Mouat (pictured) is fighting Propionic Acidemia, a rare, life-threatening disease which her family is raising money to fight with a corn hole tournament held on Saturday in Pomeroy.


Jennifer says every dollar counts in the fight to fund PA research, adding, thanks to the PAF and local supporters, Ohio fundraisers have produced a total over $130,000, allowing doctors and researchers to make strides in the diagnosis and treatment of this disorder that will hopefully give these children a prognosis for better, longer, healthier lives.

With the infusion of money raised in Ohio, the foundation was able to fund three research grants last year instead of two. This year, however, PAF was forced to turn down a research opportunity due to lack of funding for the project and Gwen’s family hopes to help change that with help from Saturday’s tournament.

For more information about Gwen’s battle, visit www.GwenForACure.com For information about the corn hole tournament, contact event organizer Jackie Buck at 508-0412. For more information about PA visit www.PAFoundation.com.

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