Maren was born on June 18, 2004. Right away, there were signs that something wasn’t right. Maren was unable to nurse and she turned blue and had nasal regurgitation during bottle feeds. When we were discharged from the hospital, the neonatologist’s last words were “She’s fine. She\’s just going to be more difficult than most.” Maren continued to have difficulty with feeding. She also began having ear infections and upper respiratory infections. At each doctor visit we were given new formulas to try and new medications for acid reflux. Nothing was helping my baby. When Maren was five months old, I took her to pediatrician number six. As part of her examination, she looked in Maren’s mouth. She put her light down, looked at me, and said “Has no one ever told you that your baby has a cleft palate?” Through a flood of tears, I was able to mumble “no”. We had also noticed that Maren had a spot on her eye. It was later diagnosed as an iris coloboma. The pediatric ophthalmologist suggested that we see a geneticist because of Maren’s history. We got the diagnosis of 22q11.2 deletion syndrome in August of 2005. Maren had developmental delays as an infant. She never crawled and was a late walker. Today, Maren is a second grader. She loves animals, art, and playing her violin. She struggles with expressive language and mild cognitive issues, yet she is on the honor roll at school. She has had two corrective surgeries for her cleft palate and she will have a third this summer. She has also had ear tubes eleven times. Despite her health issues, Maren is a happy 8 year old. She makes me proud every day.

When did Amelie start learning gymnastics? What age? When did Amelie begin to set herself apart from the others as a “budding gymnast”?

Amelie started attending kindergym classes at about 18 months. She immediately showed a love for the sport. Unfortunately, her attendance was sporadic as we were dealing with a lot of croup and pneumonia for the next few years. On the other hand, despite being told that she would have low muscle tone and poor coordination, her little body was born looking like a gymnast. She had definition in her quads and calves at two and the upper body was ripped before she turned four! This power and strength is combined with flexible joints which is a bit of a rare commodity. Amelie had her second 12 hour open heart surgery at three and waited patiently until she had recovered to start in the Pre-competitive program. She was in the gym less than two months later! She has an array of medical problems that make training extra challenging, but these issues also seem to make her extra tough. Now that she is seven years old, Amelie has been invited into the Competitive program at Phoenix gymnastics in Vancouver. One of a handful of young hopefuls being expertly trained by Mariana and Igor from 12-16 hours/wk. No one can even imagine that Amelie has a double life; gymnast and frequent flyer at the BC Children’s hospital.

Can you share more information about her training, her favorite areas (bars, beam, floor, vault?) and one or two of her milestones (when she learned a back handspring/back tuck, etc….)

Amelie has a real passion for the uneven bars, we can hardly get her to stop swinging on anything that remotely ressembles a horizontal bar. Her second favourite is vault, but is slowly being rivalled by beam. In the past, she has struggled a bit with the demands of beam as it requires terrific balance and total focus. Her ears are often fluid filled and the ability to concentrate intensely is still developing. However, under the tutelage of her new coach her fondness (and ability) for beam is increasing. As for milestones, she was doing round off back handsprings and press to handstands at six years old and is now working on cast to handstands on the bars.

What advice would you give other 22q parents? (especially about pushing forward and keeping the dream?)
It is very easy, when you have a child like Amelie who is medically fragile and susceptible to infections, to turn her into a hot house flower; to protect her and shield her from the world. Very early, my husband and I made a philosophical decision to expose her to the world, encourage her to follow her passions and that we’d live with the consequences. Has she been more frequently ill? Probably. Is she happy? Incredibly so. She has a driven, powerful personality that will not be deterred. She is best served by having outlets for that. We have enrolled her in lots of sports (not swimming!!) and let her try her hand at as much as possible. Further, her involvement in sports has likely frequently helped her to recover from illnesses or surgeries and music programs have developed her mental faculties. It’s all therapy! She has skated, rock climbed, played soccer, done ballet, tap and jazz, arts programs, hiking, skiing and plays the violin beautifully. Upon the diagnosis of Digeorge, my heart was filled with anxiety that I would have a child who would struggle in EVERY single area of her life: Social, Developmental, Cognitive, motor skills, medical – I saw nothing but suffering ahead. But her story had not yet been written. She has taught me that It’s her story and she’s the author. In the meantime, if I can give her as many reasons as possible to have good self esteem and feel some autonomy over her highly medicalized and “imperfect” body, I will.

Luke was born on December 3, 2008, a healthy, head full of dark hair, weighing 6lbs. 12 oz’s and 21 inches long. When Luke was just 12 days old he was diagnosed with Interrupted Aortic Arch, VSD, narrow arch which was not completed, along with 22Q. All of which we knew nothing about during my pregnancy. HIs first surgery was 17 hours and was completed successfully. Luke had difficulty with the suck, breath, swallow. So a G-tube was placed. He suffered at Cardiac arrest just days later. We ended up at Boston Children’s Hospital where a stent was placed in his Left Main Coronary. The surgery was again a success. We continued to follow up in Boston for monthly checkups. On Sept. 14th, 2009 Luke was listed for a heart transplant. We received the call on Oct. 31st, 2009 that Luke would be getting a new heart on Halloween. It has been 3 years since transplant and Luke continues to thrive and develop. He is our miracle child. We have another son, Drew who is 2. Luke amazes us everyday with his determination and strength to complete everyday task. He loves being outdoors, playing with his trains and animals. Luke has a long list of doctors and therapist, but takes it all with the best attitude. He is a fighter thats for sure. Duke is our main provider of care, along with therapist whom we see at our local elementary school. He has made great progress over the past 3 years and we look for many more milestones in the future.

The Dempster Family Foundation awarded 5 charitable organizations grants through its third annual grant cycle. The Dempster Family Foundation strives to lend support to charities and organizations supporting children with a 22q11.2 deletion (sometimes more commonly known as DiGeorge Syndrome/VCFS). Funds for the grant cycle were primarily raised through the annual fundraiser, Casino Night (held in May 2012 in Chicago), as well as through TEAM DEMPSTER partners holding fundraisers for the Foundation including: D’Agostino’s Pizza and Pub, Bernie’s Tap and Grill, Candyality, Potbelly’s Sandwich Shop, and others (please click here for complete list of generous partners), as well as through generous donations from other individuals throughout the year.

2012 Grant Recipients include:

Cincinnati Children’s Hospital 22q-VCFS Center

Doernbecher Children’s Hospital Foundation (OR)

Dragonfly Forest Camp (PA)

Lurie Children’s Hospital of Chicago (IL)

March of Dimes Illinois

Sassy Bee Designs, Inc. recently joined the Dempster Foundation as a Team Dempster partner and will be donating $2.00 from each sale of 22q jewelry and other items to the Foundation. Kim Brown, owner of Sassy Bee Designs, Inc. was diagnosed with 22q at the age of 25 yrs old. Kim is now 32 yrs old and a military wife. She enjoys sharing her 22q journey through her own jewelry designs while increasing awarenss of 22q deletion syndrome. CLICK HERE to purchase your own special 22q items from Sassy Bee Designs, Inc.

Interested in becoming a Team Dempster Partner? SIGN UP HERE or contact Terri Grunduski at 312-415-9846.

As we move into our third year of operations, we wanted to reflect and give thanks for the milestones and accomplishments we’ve reached in such a short period of time through the Dempster Family Foundation.

First and foremost, we want to thank our supporters for their gracious time, talent and monetary support over the years. We are continually humbled by the outpouring of donations and numerous hours friends and volunteers have put in to make each and every endeavor of the Foundation a tremendous success.

Second, we’d like to acknowledge the partnerships created over the years to help us further our mission to make a difference in the lives of other children and their families affected by 22q11.2 deletion. We feel very fortunate that our daughter Riley, who is affected by 22q and was diagnosed early in her life, is doing well facing the day-to-day challenges of living with 22q, and receiving great medical care. It is our hope that – through this Foundation – we can continue to bring about change so that all children affected with 22q will one day receive that same degree of care through increased awareness, further research and the creation of additional 22q support systems throughout the United States and abroad. We’re proud to announce that through our support, there are now (7) 22q clinics strategically positioned across the U.S. to help families deal with the diagnosis.

Finally, we’d like to recognize the families of children we meet daily through the Foundation work we do, whether on the road on the 22q Mystery Tour, at events, at the ballpark and even through emails and letters we are continually moved by their stories of strength and courage in dealing with this disorder. They are the reason we continue to push ahead to do what we do. It’s funny-they say “we make their day,” but the opposite is actually true. They are truly inspiring!

Since its inception in January 2010, the Dempster Family Foundation has raised more than $1.4 million for the fight against 22q and to assist other families of children in need. We have awarded more than $430,000 in grants alone to honorable charities around the United States and tens of thousands of dollars through in-kind support to deserving charities. Staff members and volunteers have spent thousands of hours building an international campaign to spread the word about 22q, including a nationwide bus tour and multiple 22q awareness days at ballparks around the country. On the international front, Dempster Foundation Canada has awarded grants of over $36,000 to deserving Canadian organizations. All of this thanks to the generous support from you, our loyal fans and business partners. Together, we are working to enrich the lives of those in need. Thank YOU for your support; we could not have done it without you! Here’s to continuing to make a difference in our communities!

Sincerely,

Ryan Dempster
President,
The Dempster Family Foundation