A Letter From 22q Parent, Ryan Dempster
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A Letter From The Desk of Ryan Dempster
Thanks for checking out The Dempster Family Foundation website and the 22q Mystery Tour, where we “drive” awareness of my daughter’s rare chromosome disorder. It's called 22q Deletion Syndrome(22Q for short) Some people call it VCFS and others call it DiGeorge Syndrome . You’ve probably never heard of it but here's few reasons you should.
22q is associated with six of the top ten leading causes of infant mortality. Many children born with 22q have health issues from the start, while others develop problems later in life. These issues range from mild to VERY serious and a some can be life threatening. Parents of children with 22q often describe knowing “something isn’t right”. Physicians often miss the diagnosis for years due to the wide disparity of 180 possible symptoms. One child may fight three of those issues, while another may battle forty three and no two kids are alike! It’s no wonder doctors have such a hard time recognizing 22q. We're "pitching in to change that!
22q Deletion Syndrome can cause a myriad of health and developmental concerns, from heart defects to ADHD and no two children present the same set of issues. Nearly everyone knows about Down syndrome; it's the #1 chromosome disorder responsible for intellectual disabilities. What they don’t know it that 22q Deletion Syndrome is #2. We were lucky! My daughter Riley was diagnosed 2 days after she was born. Because of that we along with her physicians were able to implement lifesaving tactics to ensure she could breathe and swallow through use of a trech and feeding tube. For Riley, 22q meant she could not do either on her own. We were told early that she would need these for the rest of her life and she would likely never speak. Because Riley, unlike many children received a diagnosis early none of those early prognosis were true. Today she eats and breaths on her own, and while her speech is delayed and she needs regular speech therapy, she does in fact speak.
Kids with 22q and their families typically endure years without a diagnosis. They overcome surgery after surgery, emergency room visits and astronomical medical bills before ever receiving a diagnosis. Knowing why your child is struggling to stay healthy or has developmental delays is essential to knowing how best to manage their care. Recently a six dollar test was developed that if added to the US newborn screen (a test already administered to every child born in the US) would immediately identify children born with 22q and drastically improve their physician’s ability to proactively address these 180 possible concerns.
This six dollar test would drastically decrease the health care costs associated with treating children in avoidable emergency room situations. Instead, physicians would have a road map to success. They could treat children based on protocols for 22q Deletion syndrome and avoid common crisis like cardiac issues, seizures, and lack of oxygen which lead to negative long term effects or simply give parents a leg up managing the child’s special educational needs.
The key to early diagnosis is simple. Greater public and professional awareness! If you do nothing else please share this letter or better yet post a link to our website on your social media pages. Thank you for your time and support of this am zing community of families around the world.
Ryan Dempster #46
RYAN DEMPSTER BIO:
Red Sox starting pitcher, Ryan Scott Dempster was born on May 3, 1977 in Sechelt, BC, Canada. Ryan grew up in a sports-minded family, with he and his two brothers, Travis and Chris, playing baseball, basketball and soccer throughout their early years. Ryan played baseball for the Northshore Twins in Sechelt, and graduated from Elphinstone Secondary School in Gibsons, BC in 1995. Ryan was drafted by the Texas Rangers in the 1995 draft. He made his major league debut with the Florida Marlins on May 23, 1998. Ryan was traded to the Cincinnati Reds in 2002 and joined the Cubs in 2004. Ryan is a two time National League All Star earning the honor in 2000 and 2008. This season marked his fourth consecutive year with double digit victories and over 200 innings pitched (seventh in his career in both categories respectively). Ryan also tied for the National League lead this year in games started as a starting pitcher with 34 starts (tied with Derek Lowe of the Atlanta Braves and Chris Carpenter of the St. Louis Cardinals).
Ryan’s earlier charitable endeavors include assisting the Juvenile Diabetes Research Foundation and Garth Brooks’ Teammates for Kids. In 2000, he hosted children from the S.O.S. Children’s Village at each of his home starts and donated $10 for every strikeout ($2090) to the KIDS THAT CARE Pediatric and Cancer Fund, established to build a pediatric bone marrow transplant unit in Miami. In 2006, Ryan and his wife, Jenny, established “Dempster’s Dugout”, a charitable ticket program that benefits local social service agencies that assist low-income children. Through this program, Ryan and Jenny host over 500 children a year at select Cubs games. The program not only allows the kids the opportunity to see their home team play but includes behind-the-scenes extras such as an escorted tour of the field, a bird’s eye view of batting practice and a chance to meet Ryan. The kids are also given “Cubs Dollars” for food and souvenirs. All this adds up to a very special day for some deserving youth.
Over the years Ryan has received many honors for his charitable deeds. In 2000 he received the James “Tip” O’Neill Award, presented annually by the Canadian Baseball Hall of Fame and Museum to the Canadian baseball player judged to have excelled in individual achievement and team contribution while adhering to the highest ideals of baseball. “The Sporting News” named him one of the 99 “Good Guys” in professional sports in 2001. Following the 2001 season, he was also presented with the “All Heart” Award by the Florida chapter of the Baseball Writers’ Association of America—given to the Florida Marlins Player who best exemplifies the team’s commitment to the South Florida community by making a positive impact and by serving as a role model for others. Ryan was the Chicago Cubs nominee for the Roberto Clemente award in 2006, 2008 and 2011, which is given annually to the major league baseball player who combines outstanding skills on the field with devoted work in the community. Ryan was honored at the 2010 Comcast SportsNet Sports Awards for his achievements on and off the field.
Ryan continues his ongoing charitable efforts through the Dempster Family Foundation, established in 2009.