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Who We Are

Here at Lilliana’s Heart Association, we know that sometimes all it takes to change the world is a little support. Since our founding in 2020, we have been determined to make an impact in memory and honor of Lilliana, a CHD and Heterotaxy Warrior. Our hopes is to make life as a Congenital Heart Disease or Heterotaxy Syndrome family, a little easier to navigate, and bring some joy to the children and parents affected. 

Ways We Help

Lilliana’s Heart Association is in the business of supporting families through rough times.  

*All donations are tax deductible under the full extent of the law under IRS section 501(c)(3). Please let us know if you'd like a receipt of donation. Please contact your tax representative for more information.

Hospital Care Packages

Annual Care Package Drive

Every year, on Lilliana’s birthday, we deliver care packages, one to every family in the CICU at various hospitals. These care packages include hygiene items for the parents, snacks, coffee, adult and child coloring books, colored pencils and crayons, games for both parents and children, toys for children, and activity books. All in a convenient draw string bag to easily take on the go for hospital visits.  

Home Care Medicial Supplies - Feeding tube - Feeding pump and bags - Pulse oximeter - nasal cannula - medications

At-Home Medical Expenses

At home medical expenses can be hard for parents of children with CHD or Heterotaxy Syndrome. We hope to ease this by helping with medication costs, and donating medical supplies. 

Hotel and Plane - Medical Travel Expenses

Medical Travel Costs

Medical travel costs can be a major hurdle for those traveling for care. We would like to help families with costs and resources related to getting to the hospital or doctors appointments, and housing when traveling long distances for care. 

Gift Cards - For food during hospital stays

Gift cards

Eating at the hospital can get expensive. We would like to provide gift cards to coffee shops and food court places within the hospital to help ease those costs. 

Toys For Childrens Hospitals - Easter baskets - Birthday gifts - Christmas gifts

Toy Drives

We would like to donate toys and gifts to Ronald McDonald houses, hospitals, and other patient-family housing places, for children inpatient, or far from home on special days such as birthdays, Christmas, Easter, Valentine’s Day, and more, to bring a little joy to those who can’t spend those days at home. We’d also like to donate play items to Child Life to make hospital stays a little more enjoyable for kids. 

Congenital Heart Disease Educational Video Slide

Advocacy

The CHD and/or Heterotaxy journey is one that is not always easy to navigate, especially at first. We aim to help families with insurance hurdles, understanding diagnoses and test results, and knowing when something is wrong. 

Would you like to support our efforts?

Anatomical Heart With Scars Zipper and Bandage For CHD - Backround Splatter in Heterotaxy Syndrome Colors

"We go through the wars to become a warrior"

Contact Lilliana’s Heart Association

Get in touch with Lilliana’s Heart Association to learn more about our work and how you can get involved.

(315) 226-6701

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©2021 by Lilliana’s Heart Association

501(c)(3) 

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