The Griffith family sees more than its share of hospitals and doctors

Written by Chronicle Staff. Posted in Uncategorized

Published on May 15, 2012 with No Comments

Pins for Peyton, Gracie fundraiser set for May 19th

In 2008, 28-year-old Randy Griffith was diagnosed with a very rare connective tissue disorder known as Loeys-Dietz syndrome. Shortly afterward the Griffiths’ son, Peyton, then 3, and newborn daughter, Grace, were tested and given the same diagnosis.

The disorder, discovered in 2005 by Dr. Hal Dietz and Dr. Bart Loeys of Johns Hopkins Hospital in Baltimore, is characterized by severe aortic root dilation and tortuous (twisting) vessels throughout the body. Other characteristics vary by individual but can include heart defects, cleft palate, club foot and premature fusion of the bones of the skull, known as craniosynostosis.

Randy Griffith suffers from aneurysms and dissections of the aorta and has had three open heart surgeries to treat his condition.

Seven-year-old Peyton, a first grader at Joan Martin in Hobart, has an aneurysm on his aorta and was born with club feet and craniosynostosis. Grace, now 4, underwent open heart surgery at the age of 3 to repair an atrial septal defect.

Yet the family remains positive and takes all its medical troubles in stride, said Sarah Griffith, wife to Randy and mother of Peyton and Grace.

Currently only about 300 individuals worldwide have been diagnosed with LDS, said Sarah Griffith, but the Griffiths know there are more families searching for a correct diagnosis and needing support.

Instead of letting Loeys-Dietz syndrome control their lives, the Griffith family works to raise awareness of the very rare disorder through the Loeys-Dietz Syndrome Foundation (LDSF) and find a cure.

Toward that end, the Griffiths are hosting the fourth annual “Pins For Peyton and Gracie Too” bowling fundraiser from 6 to 10 p.m. Saturday, May 19th at Camelot Lanes, 5201 U.S. 6, Portage. Food, games, raffles and a silent auction will be included.

The event has raised more than $50,000 in three years for the LDSF and helped fund research and awareness efforts. Sarah Griffith said the cause is very important to her family. “We really need to raise as much money as we can, because this condition is so rare,” she said.

Tickets are $30 for bowlers and $15 for spectators, with all proceeds to be donated to the LDSF.

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The LDSF was founded in 2007 to encourage education, foster research and provide support to the Loeys-Dietz Syndrome community. If you crave safety and privacy of your children, then you must get help from a monitoring tool because that is the only way for you to know if your kid is engaging in sexting

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