You’re not alone. Whether you’re spending days or months in the hospital with your child, these resources are here to support you emotionally, mentally, and practically.
Foundations
”HopeKids provides ongoing events, activities, and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition. We surround these remarkable children and their families with the message that hope is a powerful medicine. HopeKids offers an ongoing program of fun events for families who have children with life-threatening medical conditions. These events provide the family with something to anticipate and enjoy together, fostering quality time in a safe, accepting environment alongside other families experiencing similar challenges. Best of all, these events are always free.”
Grant and Grayson are HopeKids and their families have participated in many events, including a Heart Mom Brunch, tickets to the aquarium, and tickets to sporting events.
Annie Louise Foundation
“The mission of the Annie Louise Foundation is to empower families by making resources readily available and accessible to bridge the gap between the medical world and parenting. This foundation supports the following projects: gifting adaptive onesies that accommodate IV’s and other life-support, hosting dinners out and other respite wellness events for moms to connect and share time together, helping with costs of feeding therapy, swallow studies, and other medical bills not covered by insurance, providing fresh healthy meals to parents who are inpatient or home from long hospital stays.” Request an adaptive onesie here.
Emily was gifted a few adaptive onesies from the Annie Louise Foundation and pictured below is Grayson wearing it while in the hospital.
“We gift children with our LED Bluetooth Disco Speaker, who struggle with a disability or illness. The goal is to help brighten their day with this small token of hope!” To request a light, fill out the information and the foundation will see if you qualify to receive one for your child.
Services
Molly Trexlar Coaching
Molly is a Pediatric Nurse Practitioner and the founder of Heartstrings, a 9-week program designed to support Moms navigating Congenital Heart Defects. She helps them manage the stress and chaos of healthcare systems, similar to a Doula but focused on CHD. Molly empowers moms to find peace and purpose during this challenging journey. Our very own, Emily, is a Heartstrings graduate who worked with Molly. Each MomBag has a pamphlet explaining Molly’s services.
The Boy Born Brave – Children’s Book by Amelia Woods
“Amelia is the author of the children’s book, The Boy Born Brave. Her unique journey into motherhood began with her son’s CHD diagnosis of d-TGA, which inspired her to create the blog and online platform Heart Like A Mother. Amelia also owns a small embroidery business, the Heart Like A Mother Shop, where a percentage of sales are donated to heart families. She is driven to support other parents of children with Congenital Heart Disease in any way possible. Her hope in writing The Boy Born Brave is that it highlights the diversity within the CHD community, brings encouragement to new parents facing a diagnosis for their child, and educates those of us with “normal” hearts.”
StudioOneFourTwo
Hannah is a fellow Heart Warrior mom and has an Etsy shop with CHD related merchandise. She was also the illustrator of the children’s book, The Boy Born Brave. “I design cute things, raise CHD awareness, and help provide representation for medical families! I’m a handletterer, a doodler, and an illustrator. After pivoting from a certain career path and facing some major life changes, I found the incentive I needed to move forward with this business idea that’s been simmering for years: Studio 142. Your one stop shop for CHD awareness and medical representation in new cute fun ways!”
Little Jack Design Co
Kate is a fellow Heart Warrior mom and designs and sells Heart Warrior Mama and Kids Apparel for CHD Awareness. “I created Little Jack Design Co to have a creative outlet, provide for her son’s medical expenses, and create a community of others in a similar situation. My hope is to raise awareness for CHD as well as children with disabilities through stylish, comfortable and unique clothing.”
Project Mom Bags 