March 2010

Vol 5, Issue 3


               Artey Trademark

Chapter Spotlight:

Metro Detroit

It's My Heart Newsletter

Letter from the Metro Detroit Chapter President:
  I began the Metro Detroit Chapter of It's My Heart in May 2009 with a fellow "Heart Mom," Andrea Olson, who became our Treasurer.  So far, we have implemented a core IMH program, the Comfort Bags at both local hospitals, thanks to two fundraisers in less than one year.  First, we participated in the "Big House, Big Heart Race" last October with the University of Michigan's C.S. Mott Children's Hospital.  The entrance fee went to the hospital, and we raised funds for IMH by creating a team and encouraging members to fundraise to race with us.  We raised $8200 as a result.  We held our 1st Annual CHD Awareness Event and Fundraiser, "RAISE a glass to CHD AWARENESS," on Feb. 6th.  This event was a Wine Tasting and Silent Auction and allowed us to raise nearly $6,500 between ticket sales and the silent auction.  We had members of the medical community attend, as well as CHD families and others not affected by CHD personally, but who want to help.
  Since May, we grew from two officers to four, adding a secretary (Krista Jahnke) and vice-president (Melonie Stothers), as well as an additional Board Member (Lisa Ranzini).   We have two "members at large," Julie Bonfiglio and Jennifer Abler, who volunteer in whatever capacity we need; most recently they served as the co-chairs for our awareness event.  We continue to seek ways to grow, including press releases and medical office flyers informing families of our support meetings.  We also use Facebook to get information out and invite families to events.  Our monthly support meetings are the last Monday of each month and are currently held in Royal Oak at the Senior Community Center.  We provide childcare and refreshments and work very hard to get medical personnel or adult survivors of CHD to speak.  The last part of the meetings center around volunteer opportunities within our chapter.
  Some ongoing projects for Metro Detroit include a Family Fun Day, free of charge to CHD families, and also an Awareness Walk.  We hope to implement both in 2011 in addition to continuing with our February awareness fundraiser.  More immediate plans include the Legacy Box program for our CHD Angels and their families, as well as a Care Package program for catherization patients.  We have a rather large geographical area to cover as our Chapter supports both C.S. Mott Children's Hospital in Ann Arbor and Children's Hospital of Michigan in Detroit. 
 
From the Heart,
 
Mary E. Brown
President
It's My Heart ,Inc.
Metro Detroit Chapter

Metro Detroit Newsletter Pic 2

Picture taken at the Big House, Big Heart Race
4th Annual National CHD Awareness
Family Walk and Fun Run
Noah's Legacy

The 4th Annual National CHD Awareness Family Walk and Fun Run was held February 20th at Sam Houston Park. We set records for participants with 1,800 registered and over 3,000 in attendance. To date, over $150,000 has been raised with money still coming in! The weather was beautiful and after the walk, everyone enjoyed a festival in the park with great food, music, entertainment, and activities for the kids. The top ten fund-raising teams will receive an Artey Statue, but teams have until April 1st to get all collected money in to be counted. So far the top teams are as follows: Team Amelia, Team Henry, Abigail's Angels, Aaron's Soldiers!, and Blake's Band.
 
It's still not too late to be recognized as a top fundraiser for the walk. All donations must be received by April 1, 2010. The top 5 overall fundraisers will be announced on our website and national newsletter and receive an Artey Statue Award.
 
Thank you so much to everyone who ran, walked, gave, or supported this amazing event. We look forward to an even larger turnout next year!

                     2010 walk1    
                     
                                2010 walk2
   
         2010 walk4 
 
           2010 walk3
   
                      walk6

        2010 walk5

Barbara.girls

Columbus Chapter
Cardo's Pizza & Spirits Fundraiser
March 6, 2010 at 7:00 PM
For more information:
columbus@itsmyheart.org

In This Issue
Heart Journey
IMH in the News
Medical Advisory Board
CHD Birthdays
Family Matching
Donations
Someone loves IMH!
IMH Chapters

Quote of the Month


Challenges are what make life interesting; overcoming them is what makes life meaningful.

Joshua J. Marine

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National CHD Family Conference & Teen Summit 2010

It's My Heart's 2nd Annual National CHD Family Conference

June 5 - 7, 2010

2010 Conference Logo

A Conference for Adults and Children 5 years and up

  • A Teen Summit to address the needs of teenagers living with CHD
  • Meet Families Friday night at the Meet & Greet
  •   Learn about important CHD topics on Saturday at the conference while the children enjoy their own conference activities
  • Family Fun Day on Sunday

To register go to www.itsmyheart.org

Conference Fee:  13 years and up--$35.00

Children ages 5 to 12 attend for free

NO CHILDREN UNDER 5

Sponsors:

Texas Children's Hospital, Whitney Bank, &

BMC Software

 Heart Journey -

This is the story of Riley Nicole Brock as told by her mother Angela Brock

March- Riley Brock

Riley was born on December 30, 2008 with Transposition of the Great Arteries.  She was full term and the easiest pregnancy anyone could ask for.  I was so excited to have her and take her home.  When Riley was born she was blue and lifeless.  I remember that she was in the fetal position and so quiet.  They whisked her off and when the doctors cam back they started talking about Congenital Heart Defects and Transposition of the Great Arteries.  Uh.......What!  I had never heard of CHDs let alone what TGA meant.
  
Riley was taken to the Children's Hospital and underwent a balloon atrial septomy at 8 hours old.  When I finally got to see her, she was on many kinds of medicine and a ventilator.  I was so upset because I still had no idea what was going on.

On January 2, 2009 we flew to Washington, DC for open heart surgery at Children's National.  I remember the doctor coming in and asking me if I had any questions.  Well, of course I had questions.  What does this mean?  What is TGA?  What will happen?  Is it something I did?  So many questions, and yet the doctor sat there and answered every one.  Then he asked, "Do you want to hold your baby?"  Yes!!

I remember singing to Riley and telling her all about her family.  Due to her oxygen levels plummeting, the surgery had to be moved up.  I would have to hand over my child in 6 hours!  I watched the clock, and time seemed to fly by.  Then, the doctor was there.  He said, "I will treat her just like she is mine.  I handed her over with the fear that I would never hold her again.

Eight hours later, I got the page that the surgery was over and I needed to head to the surgical waiting room.  Dr. Jonas walked in, sat down, and looked at me.  He said, "She did great and she will be in the room shortly!"  I wanted to jump in his arms! 

No books, speeches, preparation, NOTHING can prepare you for seeing your child after open heart surgery.  Riley was so swollen and had wires, tubes, monitors, and another ventilator.  I fell apart.  I wanted to hold her so badly just to comfort her and let her know everything was going to be OK.

Riley made such an amazing recovery.  Even the doctors agreed.  On January 12, we flew home with many medicines and full of fear and anxiety.  By the grace of God, Riley is healthy, happy, and off of medicines.  I know things can change at any time, but I thank God for each moment I have with her.

I want to help others and share her story.  Riley is my hero.  She has taught me to fight, be strong, and believe in God and miracles.


If you have a heart journey you would like to share, please email your story to newsletter@itsmyheart.org

Read all about it! IMH in the NEWS
Moms Coming Together For Kids With Heart Defects
Arezow Doost
DALLAS (CBS 11 / TXA 21)

In the News March 2010

Some North Texas moms are making sure one group that doesn't really have its own voice is heard, children with heart disease.

"We heard of heart defects, but not as common as we were finding out," says Autumn Reo, who lives in Arlington.  "That was what was so scary, is why don't we know more about this."

Reo's 21-month-old son Jackson has a congenital heart defect.  "When I look at him it's almost like we didn't have any issues."
 
Reo says everything was normal for most of her pregnancy.  A month before Jackson was born, she found out his pulmonary valve hadn't formed properly.

According to 'It's My Heart,' a non-profit created to provide support for those impacted by the defect, CHD is the number one birth defect.

The group also says 1 in every 100 babies are born with CHD, and nearly twice as many children die from it in the United States.

"During routine pregnancies fetal ultrasound can pick up some forms of Congenital Heart Disease," explains Dr. Amy Juraszek, a Pediatric Cardiologist at Children's Medical Center.

Dr. Juraszek says some forms of CHD can be very obvious and others no so much.  She says even if you are tested while pregnant it may not be apparent right away.  "Sometimes there are forms of CHD which can be much more mild and can't be picked up until babies are older and even into their adulthood."

Parents like Reo say as common as CHD is, funding for other causes including cancer research is five times higher.  For Jackson, research on Reo's end has been key.

Reo is now working towards raising awareness by sharing her family's journey and showing other parents that there is support in North Texas.

(© MMX, CBS Broadcasting Inc. All Rights Reserved.)
Perspectives from the Medical Advisory Board:
Anissa Speight, BS, AAS, ARDMS

I've been hearing a lot about cardiomyopathy these days.  I know of children with heart defects that develop cardiomyopathy and other people that are suddenly diagnosed with it later in life with no heart defect.  Are there different types of Cardiomyopathy and what do they mean?

 

In the broadest sense, cardiomyopathy means heart muscle disease.  There are many forms such disease can take. For some, the muscle may become abnormally enlarged or thickened, for others, it may be thinned, and in others, the wall thickness may be normal but stiff. The function of the heart may be normal (at least at first), but frequently is weakened over time, often causing heart failure and the backup of blood into the lungs or the rest of the body.  In many cases, the cardiomyopathy may affect only one chamber of the heart (usually one of the lower chambers), but in severe cases can affect the others.

 

There are 3 different types of cardiomyopathy:  dilated, hypertrophic and restrictive. 

Dilated Cardiomyopathy is a condition where the heart's ability to pump blood is decreased because the heart cavity becomes enlarged and doesn't pump normally.  This then causes the amount of blood pumped out of the heart with each beat to be less than it should be.  The more slowly the blood flows through the heart the more likely that blood clots can form.  Another complication is arrhythmias and electrical disturbances in the heart.

Hypertrophic Cardiomyopathy has two different forms:  obstructive and non-obstructive. Thickening of the heart muscle at the septum between the ventricles, below the aortic valve (obstructive), eventually leading to the stiffening of the walls of the heart and abnormal function of the aortic and mitral valve function.  The increased size of the septum causes the blood to be obstructed during outflow.  The second type, non-obstructive, is where the left ventricle enlarges or hypertrophies.  The enlargement of the ventricle is what causes the amount of output from the left ventricle to decrease.

Restrictive Cardiomyopathy, also the rarest form, is a condition where the walls of the lower heart are abnormally rigid and lack the flexibility to expand as the ventricles fill with blood.  The pumping function (systolic function) may be normal, but the diastolic function (where the heart fills with blood) is abnormal.  With time this leads to heart failure.

For more information on the signs and symptoms, causes and treatment of the various types of cardiomyopathy follow these links:

http://www.webmd.com/heart-disease/guide/muscle-cardiomyopathy

http://www.americanheart.org/presenter.jhtml?identifier=4468


 CHD Birthdays

     Joshua Ronald Steinberg               Aislinn Grace Wood              McKenzie Rose Stothers                 
                         
      Joshua Ronald Steinberg                     Aislinn Grace Wood                     McKenzie Rose Stothers
           March 1, 2008                                     March 15, 2004                           March 17, 2008 
                                                       
                                                        Elijah K. Baggett
                                                                       Elijah K. Baggett
                                                                        March 29, 2006

TCH

Is your child born in April?  Please send us your child's birthday and picture so we can all celebrate your child's birth with you!

 

We also want to celebrate all your angels birthday's too! So, please send us their information so we can include them as well! E-mail to

newsletter@itsmyheart.org.
Family Matching
 
How do I cope with all of the procedures and hospital stays my child endures?

Are there any other children out there with the same diagnosis as my child? How are they doing following their surgery?

Who can I talk to that has had a similar experience?

If you have these questions and more, our Family Matching Program may be able to help you. We can "match" you with another family with the same CHD .We have more adults signing up for family matching each month .If you are an adult with congenital heart disease please consider signing up for Family Matching. You are a true inspiration for families. 
 
For more information, contact familymatching@itsmyheart.org.
Donations

Recurring monthly donations from:
*Beth Jacobson
 
One time donations from:
Shella Hoover in honor of Amelia Hicks
Barbara Vasil in honor of Maya Roberto who is doing very well and is turning 3 years old this year
Matthew Schwartz in honor of Team Tenley!
Stephanie Ramos in support of Abigail Rorick and Amelia Hicks
Vicki Christie in support of Abigail Rorick and her family
Nancy and John Ladd in support of Tenley Wolff
Tricia Berry in support of Lisa and Abby Fendrick for the Heart Walk- Love, Bryan Bell
Jim Cook in honor of Ashley Auzenne and Parrish's Peeps
Jessica Riley in support of Carver Hix!!
Scott and Clarine Gilliam in honor of Caden Ayon in Bakersfield, Ca.
Sherry Cartusciello in support of Team Amelia Melissa Rouswell
Dr. and Mrs. Winston Watkins, Jr. in honor of Michael E. Watkins
Mara Conner in support of my dear friend Katy Wolff, who has put so much of her heart into this
         organization, and her sweet little Tenley
Jett Major in honor of Katherine Lindemann

Donations "In Honor Of", "Memory Of", in recognition of a birthday, anniversary or "Just Because" can be made to It's My Heart. Not only will your donation go towards helping those affected by CHD, but also let someone special know you are thinking of them in a very special way.  All donations are tax deductible.  Your donation will further the work of spreading awareness of CHDs, fund programs such as the Comfort Bags and Care Packages to the hospitals, etc.
Someone loves IMH!
 
 "I just wanted to tell everyone how much fun we had at the (Houston) walk, and how
amazing it was to see everyone walking together for such a good cause.
I hope the financial side of it was very sucessful, and just want to
say thank you for all the hard work you guys did. I'm already looking
forward to next year!! Can't wait for the conference, last year's was
AWESOME!!
~Tamara from It's My Heart Facebook
 
Do you know someone who loves IMH?  Send a story of how someone you know reached out to the CHD community! Email newsletter@itsmyheart.org.

It's My Heart Chapters

The mission of It's My Heart provides strength and support for those affected by Heart Defects. It's My Heart exists to provide support to and advocating for those affected by Acquired and Congenital Heart Defects. Through awareness, resources and education, It's My Heart creates alliances and networks among families, groups, hospitals, and the community. 

The objective of chapter development advances our opportunity to increase awareness, support and thereby advocate for those affected by CHD.

 
If you are interested in organizing a chapter or walk in your area, please contact the It's My Heart National Office at (713) 334.4244 or (888) HEART.07 or e-mail
chapters@itsmyheart.org.


Click here to find the IMH Chapter nearest you:

Fresno, California
South Florida 
Indiana (Michiana Chapter)
Central Louisiana
Indiana
Boston, Massachusetts
Detroit, Michigan
Michigan (Michiana Chapter)
Northern New Jersey
Cleveland, Ohio
Columbus, Ohio
Oklahoma City, Oklahoma
Portland, Oregon
Metro Philly
Memphis, Tennessee

Fort Worth, Texas
Houston, Texas
Seattle, Washington


Click here for developing IMH Chapters

 
National Officers & Official Volunteers

Corrie Stassen, Executive Director                                  corrie.stassen@itsmyheart.org
Katy Wolff, Vice President                                                katy.wolff@itsmyheart.org
Lauren Simpson, Secretary                                              lauren.simpson@itsmyheart.org
Alexis Durham, Treasurer                                                 alexis.durham@itsmyheart.org
Anissa Speight, Medical Advisory Board Coordinator      anissa.speight@itsmyheart.org
Laurie Hutchings, Family Matching Director                     laurie.hutchings@itsmyheart.org
Ann Martin, Literature Distribution                                    ann.martin@itsmyheart.org
Ashley Auzenne, Project Development                            ashley.auzenne@itsmyheart.org
Gail Brasser, Project Seamstress                                     gail.brasser@itsmyheart.org
Pamela Floyd, Conference Chair                                      pamela.floyd@itsmyheart.org
Allison Johnston, Newsletter Co-Editor                             allison.johnston@itsmyheart.org
Amy McCathran, Newsletter Co-Editor                             amy.mccathran@itsmyheart.org
Heather Vinson, Financial Director                                    heather.vinson@itsmyheart.org
Kate Shamszad, Child Life Specialist                                kate.shamszad@itsmyheart.org
Jill Vantine, Transition Coordinator                                    jill.vantine@itsmyheart.org
Cailey Fitzgerald, We Got Heart Chair                              cailey.fitzgerald@itsmyheart.org
Tiffany Galligan, Marketing                                                tiffany.galligan@itsmyheart.org
Ty McCathran, Legislative Liaison                                     ty.mccathran@itsmyheart.org
Robyn Steinberg, Web Administrator                                 robyn.steinberg@itsmyheart.org
Tim Hutchings, Web Administrator Assistant & Graphics   tim.hutchings@itsmyheart.org
Kim Shadek, Chapter Liaison                                             kim.shadek@itsmyheart.org
Pamela Camit, Chapter Liaison                                          pamela.camit@itsmyheart.org