Regional Coordinators and Facebook Pages

Linked by Heart (LBH) is divided amongst six regions within the United States. Each region is represented by our Regional Coordinators (introduced below), moms from across the nation who’ve walked in your shoes and want to help you connect with other families in your same situation. They can assist you in “Linking Up” with other HLHS families in your geographic area or receiving care and treatment at your hospital.

Private Facebook groups for each region are available to join as another way to connect with HLHS families. The pages are established and maintained by LBH Regional Coordinators. These Facebook groups are open by invitation requests only for families in your region. Our goal is to offer you and your family a safe, hopeful and comfortable environment through a network of families at different stages in their HLHS journeys. Direct links to LBH Regional Facebook pages are provided below.



Please use the following map to locate your region. Feel free to contact your coordinator(s) and/or join your regional LBH Facebook group using the information provided below.

 

Meet Our Regional Coordinators:


NorthWest Region

Visit our NorthWest Regional Facebook Group

Susie Maxwell
susie@linked-by-heart.org
Personal Blog: www.babygirlmaxwell.blogspot.com

Teagan was born in 2008 with critical aortic stenosis, which led to Hypoplastic Left Heart Syndrome. She had her first open heart surgery at 6 days old (Norwood/DK Stansel ) and her second open heart (the Glenn) at 6 months old. In her first year she also had 3 heart catheterizations, ng tube feedings for 9 months and multiple physical therapy/feeding therapy appointments. Today, Teagan is a thriving, happy and life-loving 3 ½ year old who brings so much joy to our family! We are awaiting her upcoming 3rd open heart (the Fontan completion) and feel so blessed to have her in our lives!

Kelsey Garka
kelsey@linked-by-heart.org
Personal Blog: www.masongarka.com

I am married to the "All American Guy next door" and the mother to a miracle. I like to consider myself a life juggler, trying to manage a home, a business, a career, a child (with one on the way) and of course my marriage. I have learned through personal experience that with tragedy can come some of life's greatest blessings. I am blessed and I feel blessed to be able to give back.

SouthWest Region

Visit our SouthWest Regional Facebook Group

Jennifer Fultz
jenn@linked-by-heart.org
Personal Blog: www.onebigmiracle.blogspot.com

Jennifer resides in Southern California with her husband and daughter, Zoe, who was born on July 4, 2011 with Hypoplastic Left Heart Syndrome. She enjoys being a stay at home mom, entertaining, creative projects, reading, cooking, surfing and spending long afternoons at the beach with her family. Zoe is a thriving, healthy little girl, who had her Norwood in July 2011 and Glenn in January 2012. Jennifer is a heart mom with a passion to share Zoe's story of hope.

MidWest Region

Visit our MidWest Regional Facebook Group

Raina Blake
raina@linked-by-heart.org
Personal Blog: www.carepages.com/KylansBigHeart

Raina is a stay at home mom to Kylan. She graduated from Northern Illinois University in 2000 with a BS in Accountancy and has a CPA. After several years in the corporate world, Raina decided to focus her life on being a stay at home mom once she found out she was pregnant with her son that would be born with Hypoplastic Left Heart Syndrome, Double Outlet Right Ventricle, Transposition of the Great Vessels and Mitral Valve Atresia. In 2 years Kylan had gone trhough 3 open heart surgeries, 4 cardiac catheterizations and 2 other surgeries and is doing amazing. She loves meeting new heart families and sharing her experience, and she feels most fulfilled being at home watching her son grow, develop and enjoy life as much as he does

Kali Kiecker
kali@linked-by-heart.org
Personal Blog: www.caringbridge.org/visit/joziekiecker

Kali was born & raised in a small town in Southeast North Dakota, where she lives now with her Husband Tanner, and two beautiful girls Jozie (HLHS) and Emmy. She works part time as a dental Hygienist and full time as a mom &wife:). Her heart mom Journey began in February 2008 when shortly after Jozie's birth, it was discovered something was wrong with her heart and was then diagnosed with Hypoplastic Left Heart Syndrome. Jozie has undergone 4 heart surgeries and is doing well, on most days she wears mom & dad out long before she plays out:) Kali enjoys camping with her family in the summer and is almost always on the go! She attends a monthly CHD support group in ND, is a support parent for Project Carson, an outreach program in ND for families facing special healthcare needs, & is looking forward to reaching out to more families through LBH, sharing Jozie's story & offering HOPE to families.

South Region

Visit our South Regional Facebook Group

Sarah Stewart
sarah@linked-by-heart.org
Personal Blog: www.emmajanae.blogspot.com

I have been married to my wonderful husband Scott for six years. In 2010 we were so blessed to find out that we were having a baby. At the 19 week ultrasound we found out that our precious little girl had a severe heart defect that we later learned was HLHS with RAS. The last year and a half have been a crazy ride. We officially moved to Texas in January to be closer to Emma's doctors. I love staying home with my baby girl. In my spare time, I am working on my Ph.D. I love to sing, travel, read, camp and spend time with my AMAZING family and friends.

Brandi Gandy
brandi@linked-by-heart.org
Personal Blog: www.caringbridge.org/visit/gandyfamily

Dec. 6th, 2010 my husband and I went in for our routine 20 week sonogram and our lives changed forever. We were expecting our second child (we have a precious son, Jackson, who is now 4!) and could not wait to find out the gender! That was the day we learned our little girl would be born with a very special heart. Madison was born on May 2nd, 2011 in Houston Texas (TCH). She had her first surgery at a week old, and emergency cath at 4 weeks old, and her Glenn at 6 months old. She is now 1 and doing absolutely amazing! She is active, beautiful, smart and a walking miracle! I never even knew about this heart world, much less thought I would ever be a part of it. But, I am proud to be a heart mom, proud of my heart warrior, and blessed to be a part of such an amazing community. Talking to other families has really made my journey easier and I hope I can help provide some comfort and support to others.

NorthEast Region

Visit our NorthEast Regional Facebook Group

Meghan Nicchi
meghan@linked-by-heart.org
Personal Blog: www.meghanandtommy.com

Meghan became a heart mom when her daughter Brooklyn was born with HLHS on February 16, 2011. Brooklyn is the first child born to the Nicchi’s and her diagnosis, while overwhelming at first, has driven Meghan to want to help others with a similar story. Meghan works full time as the Head Athletic Trainer for Skidmore College in upstate NY, and has recently joined the Sisters by Heart efforts to serve as one of the northeast coordinators for Linked by Heart. Meghan hopes to be able to share Brooklyn’s heart journey in order to help and raise awareness for CHD’s.

Stacie Jackley
stacie@linked-by-heart.org
Personal Blog: www.thejackleyfamily.blogspot.com

Stacie became a “heart mom” when her HLHSer, Kellen, was born on December 21, 2010, at Children’s Hospital of Philadelphia. Kellen has a big sister, Kaylin, 3, who is a big help in caring for her brother. Stacie works full-time as a Vendor Operations Manager for Ebay, Inc. In addition to working, she advocates for Pulse Ox screening for newborns in PA and is a Reiki 1 Practitioner. Kellen’s heart journey has inspired her to raise awareness for HLHS and help fund research for Pediatric Cardiology.

SouthEast Region

Visit our SouthEast Regional Facebook Group

Natasha Sawyer
natasha@linked-by-heart.org
Personal Blog: http://ngreen114.blogspot.com/

I am a 9-1-1 Dispatcher turned stay at home mom to my two wonderful babes, Ellianna and Evan. My husband, Scott, is a Firefighter/EMT and we spend most of our free time together with our kids. I never imagined our son would be born with HLHS, nor did I imagine how drastically our lives would change once he was born. Now, with two open-heart surgeries under our belt, I am enjoying every second with Evan and looking forward to watching him grow up!

Colleen Melchiorre
colleen@linked-by-heart.org
Personal Blog: Paulsheart.doodlekit.com
I am a former full time advocate and speaker turned research and then stay at home mom. I married the love of my life and high school sweetheart, Dan after a 10 year break! Our first child was diagnosed with HLHS at a random 30 week ultrasound. Paul was born in December of 2011, he had the Norwood at 6 days old, the Glenn at 4 months and a Nissen and Gtube placement at 5 months. Today, Paul is surviving and thriving. He is the happiest baby you would ever come across- he loves eating baby food, hanging out with his dog, Ruby, rolling around and laughing. Dan and I feel blessed every single day to be with each other and have sweet baby Paul our lives. In my spare time I enjoy dating my husband, soaking up every moment with my son, working part time doing research on recruitment and retention with the best company in the world, volunteering, watching movies, and doing Pilates. I am honored to serve the HLHS community through my role with Linked by Heart. I believe that a faithful heart is a fearless heart- I look forward to helping you on your fearless and faithful journey.