06/03/2026
✨ ‼️DONATIONS NEEDED!‼️✨
We are RIDICULOUSLY behind this year due to numerous circumstances (surgeries, family stuff, and my return back to school so that I can help CHD kiddos in more ways).
That said, our plan for this year’s care package drive is for C. S. Mott Children’s Hospital in Ann Arbor, Michigan! We still have to get all of the details from ChildLife, and once we have that, an Amazon list will be posted as usual! So, keep an eye out for that!
C. S. Mott is currently ranked the #1 Children’s Hospital in Michigan, #1 Cardiac center in Michigan, and #13 Cardiac center in the United States (Specifically Pediatric rankings).
For those who are new to us, we are a registered Section 501(c)(3) Nonprofit Organization that focuses on supporting families with children who have Congenital Heart Disease (especially complex congenital heart disease), as well as children with Heterotaxy Syndrome. We started this nonprofit in honor and memory of my daughter who was a Heterotaxy heart warrior. During our journey as a heart family, we experienced and witnessed numerous areas of support needed for complex heart families and heterotaxy families…
From fighting for insurance approvals to go to higher volume centers that were equipped for and knowledgeable on rare complex heart defects and the complexities of Heterotaxy Syndrome, to affording travel expenses (housing, food at a hospital, gas/plane tickets/train tickets, parking, uber to and from the hospital/hotel), to management of homecare with tons of medications and medical equipment, to special protocols that are NOT widely known, to needing more homecare equipment than insurance covers, to finding the right providers for the care needed, to understanding the different types of treatments/surgeries and their risks/benefits/what to expect, to figuring out care for siblings or pets while the heart baby is inpatient far away, to spending holidays and birthdays in the hospital, to grief support and simply support on the journey of a parent with a medically fragile child, to understanding defects and how they affect the body, to achieving second opinions, to having unexpected emergency trips to the hospital with nothing to care for yourself while stuck there for days or weeks on end and not wanting or able to leave them to run home and get stuff, to sorting through the accurate versus biased information on social media.
Some of these issues were not mine, some of them came easy for me. Others, I needed help for. I received help from several different organizations during that time for each of these things that I couldn’t manage well on my own at the time. It was something that took months and months to find all of the supports and information for. So, we wanted to make Lilliana’s organization an all-in-one/one-stop-shop kind of deal. So that is what we do. We have programs for holidays, travel support, care packages/go-bags, emotional support, educational support, insurance and second opinion advocacy and education, a medical supply closet, and a Facebook group that solely allows evidence-based/backed information.
On July 19th (Lilliana’s Birthday) every year, we hand deliver care packages/go-bags to every family in a pre-selected Pediatric Cardiac ICU. It has everything a parent or guardian staying inpatient with a child could need, as well as some things for the child. Hygiene supplies (good, known brands, not just cheap stuff the hospital provides. And beyond just the soaps, but also things like shavers, loofas, etc., note taking supplies, leisure/relaxing supplies, travel mug, coffee/gum (when permitted), and some little things to occupy the child such as an age appropriate toy, sensory items, bubbles, etc. All packed into a large reinforced tote bag to keep packed by the door after discharge to always have that go-bag ready to go. We choose a different children’s hospital in a different state every year!
We are solely donation-based. We do sell awareness products, adaptive products, and MediBudi stuffed animals and dolls (customized with matching scars and medical equipment to the child) AT COST, plus a donation fee of $5-$15 depending on the item to help with fundraising, as well as collect cans for return money for additional funding. However, the majority of our funding comes from direct donations, and the past couple years due to lack of donations, our board members ended up our primary donors. Please consider donating to support these families of medically fragile children! Options to donate include direct donation via the PayPal Charity link below (you do NOT need a PayPal account to use it! All cards are accepted), purchasing an item, dropping off cans (if you are local to Williamson, NY—30mins from Rochester, 55mins from Syracuse), Mailing a check/money order/cash (be aware of any mailing address changes as we did end up closing our PO Box last year due to lack of funding), donating via one of the Facebook donation buttons (this does however take 2 months to process and they do take a portion of it, so it would be helpful for future program uses, but not this care package drive), or, during the care package drive, an Amazon link will be posted with the items still needed for this year’s care package drive which you can order and have sent to us directly from the list (check back next week, the list should be posted by end of the day Monday June 8th 2026 at the latest).
All of our links including the PayPal charity donation button link are posted below the hashtags!
Support For Heterotaxy & CHD Families:
Web- www.LillianasHeartAssociation.org
YouTube- https://youtube.com/
Facebook- Lilliana's Heart Asso
Instagram- https://instagram.com/lillianas.heart.association
Donate- https://www.paypal.com/donate/?hosted_button_id=7TSHKFH57RE7E
Help support Lilliana’s Heart Association Inc by donating or sharing with your friends.
