A symptom that can be commonly found in some 22q patients is cardiovascular issues. Support the Foundation, the American Heart Association and Riley and all of her 22q friends by wearing RED during the month of February! Together we can make a difference!

Learn more about the American Heart Association’s American Heart Month

We have a “sweet” deal for you … a special Candyality Chocolates and Casino Night package, including two (2) general admission tickets to the event on May 9th, and a box of specialty assorted chocolates from Candyality for Valentine’s Day for only $300 – a $525 Value! Proceeds benefit community organizations in Chicagoland and support families of children with 22q.

Order Your Sweetheart Deal by Feb. 14, 2012 at any of the Chicago Candyality locations below!

3425 N. Southport Avenue
773-472-7800
520 N. Michigan Avenue
312-527-1010
835 N. Michigan Avenue
312-867-5500

OR

Click Here to place your order online
Please place order online by Feb. 9, 2012 for Valentine’s Day delivery.

Click here for more information on how to sign up!

Alongside her husband, Chicago Cubs Pitcher, Ryan Dempster, Jenny works hard to further the mission of her family foundation, which supports families of children with 22q (or DiGeorge Syndrome, a genetic disorder caused by a microdeletion of the 22nd chromosome), works with military families, reaches out to families with children with chronic diseases, and supports animal shelters.

Ryan and close friends were on hand Sunday night as Jenny received the award. An announcement was made last evening, that a portion of the proceeds from the dinner will benefit The Ryan and Jenny Dempster Family Foundation in Jenny’s honor.

Hall of Fame Great Andre Dawson was the Guest of Honor and Dave Dombrowski was honored with the Lou Boudreau Hall of Fame Award at Sunday night’s Awards Dinner.

Other Award winners included:

• Guest of Honor – Hall-of-Famer Andre Dawson
• Lou Boudreau Hall of Fame Inductee -David Dombrowski, President and General Manager, Detroit Tigers
• Chicago Area Major League Player of the Year – Curtis Granderson, New York Yankees
• Jerome Holtzman Award presented by The Chicago Baseball Museum – Minnie Minoso, Chicago White Sox
• Dizzy Trout Baseball Ambassador Award – Roland Hemond, Arizona Diamondbacks
• Mary Frances Veeck Woman of the Year – Mrs. Jenny Dempster, Chicago Cubs and Dempster Family Foundation
• Harry Caray Sportscaster of the Year – Dan Roan, WGN Television
• Nick Kamzic Scout of the Year – Kris Gross, St. Louis Cardinals
• Bill Gleason Sportswriter of the Year – Scott Merkin, MLB.com
• Major League Executive of the Year – Doug Melvin, Milwaukee Brewers
• Minor League Executive of the Year – Bill Waliewski, Joliet Slammers
• Chicago Area Minor League Player of the Year – Casey Crosby, Detroit Tigers
• Chicago Area College Player of the Year – Jeff Holm, Michigan State University
• Chicago Area Amateur Coach of the Year – Justin Fleener, Teutopolis Wooden Shoes
• Bo Jackson Courage Award – Jack Deheer, Roy Hobbs Baseball
• Len DiForte Amateur Baseball Service Award – Al Budding
• Charlie Hum Club Service Award – Jim Hall
• Pitch & Hit Club President’s Award – Old Timers Baseball Association of Joliet

In its 66th year, the Pitch and Hit banquet is the longest running and only industry-wide winter baseball banquet in the Chicago area. Proceeds from the dinner benefit other worthy baseball-related organizations, including Cubs Care, White Sox Charities and the Professional Baseball Scouts Foundation. For more information, please contact the Pitch and Hit Club at http://www.pitchandhitclub.org/.

So, we had our little girl.

I had no idea what was going on if she was okay, if she was breathing, etc. A little while later we were told they have her under control and she was being transported to Springfield (about 45 minutes) from where we were. That was fine. I got to see her for just a few minutes before they took her away. I was scared to death. The first few weeks we were just trying to make sure she was gonna be okay or not. They were concerned with her brain bleed and getting her breathing under control. About three months or so into being at the NICU I get a call they wanted to do chromosome testing I said go ahead. I wanted as much information as possible. Of course she had lung disease from being premature, etc. But, by then she had been doing as well as could be expected if not better then the doctors and staff originally had thought she would.

Later that week we find out she has DiGeorge Syndrome (aka 22q11 deletion) WOW! That’s a lot to take in. We talked to the doctor that ran the testing got the information we needed and said okay here we go. She has no facial features that you can tell no heart problems no problems with eating, etc. So it was a lot of she could have this could have that.

She has had two surgery’s one for her eyes to get corrected, and tubes put in her ears for infections. She is now 2 years old! and doing absolutely wonderful. We have OT, PT, and DT coming in once a week to work with her. Speech has seen her as well. She is still playing catch up on developmental growth which she can do up till age 5 I believe. She is standing better now and hopefully will walk SOON.

But, we’re taking that one day at a time. She can sit with support just not on her own yet. We are giving her all she can have at this point. We go to our NICU follow up in March and go from there. It’s a daily struggle to remember how far she’s come and the strides she’s made and will continue to make. She is a very upbeat happy, healthy, smily 2 year old. She is our miracle child. She is now showing her lovely personality, as well as hitting her terrible two’s at the same time.

She has a love for Olivia and Bubble Guppies, any of her musical toys that light up or make noise. I have done a lot of research on this prognosis and she does not show any of the typical aspects of it. We will continue to go one day at a time. She has always had HER own time for everything and we\’re sure that will continue. She is just our little angel and will continue to make her happy and make sure she\’s healthy. We never take a day for granted. Thank you for all your doing for this cause!

Kirsten was our first baby and we were so excited to be parents. Everything seemed great, but we immediately noticed that Kirsten had a difficult time nursing. The nurse thought that she heard a murmur but the pediatric physician didn’t hear it so no tests were ran. After coming home from the hospital she continued to have nursing problems. At one week old our pediatrician did hear what he thought was a heart murmur. He told us that it was normal and would likely grow up within a week.

One week later he saw us again and said that it sounded like a VSD. He referred us to a pediatric cardiologist. The cardiologist discovered that Kirsten had an ASD, VSD, and a PDA. She had open heart surgery at the age of 1 to repair the heart disease. We were so relieved to know that she was healed and we thought our nightmare was over.

Little did we know that this was just the beginning.

After the surgery Kirsten started getting sick all the time. She was constantly getting upper respiratory infections and colds. Then came the asthma and frequent croup episodes. We also discovered that she has environmental allergies and had to begin breathing treatments and allergy medications. Then at the age of 3 Kirsten started talking only no one could understand her because she had a very hyper nasal speech and her pronunciation was very much delayed. She went through extensive speech therapy in pre-school at the age of 3 and 4. She was also delayed in pretty much everything from walking, talking, to even getting her first tooth at 17 months old.

She’s always been a lot smaller than other children too. She was shyer than a lot of other children her age and was scared to try new things, but at the same time she tried hard to please everyone around her. Although she had many struggles she was a pretty happy kid. She adores music and art. She has a piano, guitar, and even a drum set. She runs around the house pretending to be Taylor Swift and can spend hours coloring. She loves going to music shows and plays. She becomes engrossed with anything musical or in the arts field. She also loves gymnastics and jumping on the trampoline. We’re thankful that she has good outlets.

At the age of 5 she tested out of speech but she still had the hyper nasal speech and high pitched voice. We thought kindergarten was going to be a great and healthy year, but we then discovered that she had scoliosis which will require fusion surgery around the age of 10. She’s been in a back brace since May of 2011 and wears it 20-plus hours a day. Her curve is currently 31 degrees and is expected to progress drastically when she reaches adolescents. She continued to get strep and other respiratory infections all through kindergarten.

Once Kirsten reached first grade she was still getting sick all the time. In fact within the first two weeks of school Kirsten got strep throat again. In October of 2011 she had her tonsils removed. Following the surgery her speech regressed back to what it was at the age of 3 as if she’d never had speech therapy. We took her back to the ENT and he immediately sent us to Pittsburgh Children’s hospital for a second opinion. That ENT examined her, listened to her medical history, and really looked at her features. Then he said that he thought that she has Velo-Cardio Facial Syndrome also known as 22q Micro Deletion Syndrome. She was tested and it came back positive.

Our lives had changed in an instant.

On one hand it was a relief to have an answer to her health issue, but then we quickly realized that just because you have a diagnosis doesn’t mean that you no longer feel alone. We realized that no one around us including our own doctors, specialists, school district, and the people in our community knew very little if anything about 22q Micro Deletion Syndrome. I became infuriated. How could our child have so many symptoms and how could we have gone 6 ½ years with no one picking up on this? How is it that a child can have so many specialists and yet not one person even thought to test her for this? I was not only devastated, but incredibly saddened. See we had expressed to all of Kirsten’s doctors from the beginning that we strongly felt that something wasn’t right and that all of this had to be related, yet no one picked it up or listened to us.

We were told in a very professional and polite way that we were worrying too much and that some kids just “get sick.” We were told that her symptoms couldn’t be related and that her heart disease is really common so there wasn’t any reason to test her for anything else. While it was true that some kids get sick and a VSD is common, it’s not normal for a child to have multiple symptoms and in most cases in which a child has a heart disease, VPD, developmental delays, scoliosis, frequent illnesses, etc. it is usually due to some type of other medical condition or syndrome. It’s also interesting to know that while most people haven’t heard of this syndrome it actually affects 1:4000 kids and is the second most common syndrome after Down’s Syndrome — 1 in 68 children born with a heart disease have 22q Miro Deletion Syndrome. People just don’t seem to want to know anything about this syndrome. This is really sad because these kids need good health care and need communities, doctors, teachers, specialists, etc to be aware so that more kids can be diagnosed and treated properly.

Once we got the diagnosis we vowed to do all that we could to learn about this syndrome and tell our story to anyone that would listen. I guess you could say that we turned into research hounds. We’ve been reading books, searching sites, reading anything that we could about the syndrome. As her mom I have become consumed with it. I have vowed to make sure that all of our doctors know that they not only missed this, but that this syndrome is very common. I don’t want any other child or family to go 6 1/2 years without answers like we did.

In doing all of this research I came across a 22q clinic in Columbus, Ohio. This clinic is comprised of all different medical specialists and surgeons that are known throughout the country for their knowledge and care for children with 22q. I made an appointment, fought our health provider to cover the appointment, and saw to it that Kirsten had the very best. Now she does. This clinic is amazing. For the first time we felt like Kirsten’s health made sense. We saw several teams of doctors and they all wanted to hear our story starting from pregnancy. Finally someone really listened and they understood. The geneticist at the clinic immediately ordered a complete immune work up on Kirsten since many of these kids have immune issues. Kristen does show some signs of this including terrible leg and foot pain at night which she’s had for years. We’ve always been told that its growing pains or due to the scoliosis but it could be due to low calcium levels. She also has had digestive issues since infancy. Kirsten will be undergoing a kidney renal exam too. She will also have a Nero Phyc exam to test her cognitively for any learning disabilities. This doctor will be making any IEP recommendations to our school so that we can ensure that Kirsten is getting the best education possible. Kirsten was seen by a speech scientist and the chief of plastic surgery because Kirsten suffers from a VPD. A VPD is condition where the velopharyngeal valve does not close consistently and completely during the production of oral sounds so basically Kirsten has a lot of extra space in the back of her throat. This causes a lot of air to gush through her nose causing hyper nasal speech. Normal hyper nasal speech is 10 percent and Kirsten is ranging from 46-67 percent which is clearly a problem. The speech and plastic surgery team determined that Kirsten’s VPD can be corrected via surgery. The chief of plastic surgery will be doing a Velo-Pharyngeal Flap surgery to correct this on Feb. 8, 2012..

We’ll be going down on the 7th for pre-op and for another visit. Providing there are no complications she’ll be released from the hospital on Feb. 10. This surgery will fix Kirsten’s speech and for the first time ever she’ll sound like other kids her own age. We are thrilled to know that we can at least fix this symptom and make things a little easier for her. We are pleased with where things are going now and cannot be more pleased with the care that Kirsten is receiving from Dr. Atkin, Dr. Bayliss, and Dr. Kirschner at the 22q clinic. While we are nervous about yet another surgery, but we also know that the outcome will be fantastic. Thank you for hearing our story and I hope that this helps to bring more awareness to 22q Micro Deletion Syndrome.

May 9, 2012 at the Legendary Palmer House

2011 Sponsors | Photos | Media Coverage | Tickets

The Third Annual Dempster Foundation Casino Night is set for May 9, 2012 –at the Palmer House in Chicago. As last year, the night will include a VIP party from 6-7 PM and the main event in the ballroom starting at 7 PM! Guests will step back in time for a night on the town in “Old Chicago”—the theme for this year’s event –mingling with Ryan, Jenny, the Chicago Cubs and other celebrity friends from the sports and entertainment industries, enjoying a full spread of delectable dishes and open bar, along with a unique live and silent auction, fun casino games, and entertainment to help raise funds to help “Strike Out 22Q” and support other children’s charities in Chicago.

Early Bird ticket special now available for a limited time… only $300 for two general admission tickets (a savings of $200—regularly $500!)

$175 – General Admission Admit One ($250 Value)
$300 – General Admission Admit Two ($500 Value)
$1000 – VIP for Two (Limited Edition Diamond Package)

This limited EARLY BIRD offer ends April 1, 2012.

Click here to purchase the Early Bird Ticket Special.
For sponsorship information contact the Dempster Foundation at 312-415-9846.

To learn more about this annual event, check out photos and coverage from the 2011 festivities at the Legendary Palmer House!

In addition to the Night of Fun, D’Agostino’s Pizza & Pub supports a monthly program for the Foundation called “22q Days at D’Agostinos,” where $1 from each pizza sold at all four D’Agostinos locations is donated to the charity. Over $10,000 has been raised to date through the program for the Foundation. D’Agostino’s will also be a veteran sponsor at The Dempster Foundation’s Third Annual Casino Night on May 9, 2012 at the Palmer House in Chicago.

A relatively unknown, but prevalent disorder, 22q can be present in children with any of over 180 symptoms, including: difficulty swallowing, heart failure, speech impairments, learning disabilities and immune deficiencies. Re¬cent studies suggest that as many as one in every 2,000 births is affected by this disorder. For more information on 22q11.2 deletion or other Chicagoland charities the Foundation supports, please visit the Dempster Family Foundation website at: www.dempsterfoundation.org.

The Ryan and Jenny Dempster Family Foundation strives to lend support to charities and organizations supporting children with a 22q11.2 deletion through monetary grants, programs and increased community awareness. The Dempster Foundation empowers organizations to help children overcome difficult situations through providing funding to continue research for early detection of this disorder; supporting programs about 22q that provide education, physical therapy and activity to promote long term well being; creating initiatives that build and instill confidence in these children; and developing a 22q network for families affected by this disorder to share their stories and help navigate healthcare options and treatments.

May 9, 2012 at the Legendary Palmer House

2011 Sponsors | Photos | Media Coverage | Tickets

The Third Annual Dempster Foundation Casino Night is set for May 9, 2012 –at the Palmer House in Chicago. As last year, the night will include a VIP party from 6-7 PM and the main event in the ballroom starting at 7 PM! Guests will step back in time for a night on the town in “Old Chicago”—the theme for this year’s event –mingling with Ryan, Jenny, the Chicago Cubs and other celebrity friends from the sports and entertainment industries, enjoying a full spread of delectable dishes and open bar, along with a unique live and silent auction, fun casino games, and entertainment to raise funds to help “Strike Out 22Q” and support other children’s charities in Chicago.

Early Bird ticket special now available for a limited time… only $300 for two general admission tickets (a savings of $200—regularly $500!)

$175 – General Admission Admit One ($250 Value)
$300 – General Admission Admit Two ($500 Value)
$1000 – VIP for Two (Limited Edition Diamond Package)

This limited EARLY BIRD offer ends April 1, 2012.

For sponsorship information contact the Dempster Foundation at 312-415-9846.

Click here to purchase the Early Bird Ticket Special.

To learn more about this annual event, check out photos and coverage from the 2011 festivities at the Legendary Palmer House!