When Jacqueline Tillman’s daughter Tiana was just 3 months old, she went into heart failure. After the second trip to the hospital, Tiana was diagnosed with dilated cardiomyopathy, which unfortunately meant that she would need a heart transplant.
There is no doubt about how hard it is to wrap your head around the fact that one family needs to suffer a loss to help save your child, especially when your little kiddo is in the NICU. But Jackie and her husband Charles Tillman are certainly paying it forward with their generous spirit.
Jackie is a mother of 4 and an advocate of children’s charities and heart research. And you just might recognize her husband as the legendary NFL cornerback of the Chicago Bears and the recipient of the 2013 Walter Payton Man of the Year award.
In 2005, they created the Charles Tillman Cornerstone Foundation. When Tiana was born in 2008, they created the Tiana Fund, which helps provide unique support and financial assistance to families with sick children.
Jackie shares her experiences while caring for Tiana in the hospital. You’ll hear how fortunate she was to be able to spend time with their daughter when so many couldn’t. We also discuss why it’s such a huge challenge for so many families to spend time with their children who are receiving and recovering from treatments and why Jackie and her husband are so passionate about the work they’re doing.
She talks about the important roles that social workers play for families with sick children, how they celebrate a “heart” birthday each year for Tiana, and how Tiana was the first recipient to receive the Berlin Heart in Illinois.
She also reminds us that it’s vital that we speak up when our children can’t speak up for themselves. While the doctors are the medical experts, parents always know their kids best.
Key Takeaways with Jaqueline Tillman
- How Jackie knew that something wasn’t right with Tiana when she stopped eating and what led to her diagnosis.
- What the Berlin Heart does for those who are waiting for heart transplant surgeries.
- The ups and downs that Tiana had along the way, from being in a coma, and paralyzed on and off, and the 6 months of chemo treatments.
- How Tiana became addicted to pain medication as a child and had to be weaned off of those medications.
- Understanding how difficult it is for families that still have to work instead of spending more time with their kids in the hospital.
- Many kids spend a lot of time being alone in their rooms.
- How the Tillman family celebrates Tiana’s heart donor with a heart birthday each year.
- The realization that benefitting from a heart transplant also comes with many follow-up visits, as often as every 3 months.
- Parents know their children best, so don’t be afraid to speak up if you feel like something isn’t right.
- The important roles that social workers play in addressing the needs of families, including making connections to charities like the Tiana Fund.
- The amazing things that the Charles Tillman Cornerstone Foundation is doing to help other families with sick children.
- How the Tiana Fund uniquely helps families with almost every challenge, both financially and non-financially, with whatever support they can offer.
Jacqueline Tillman Tweetables
- “You are your child’s voice while they don’t have one so don’t be afraid to speak up.” – Jackie Tillman
- “It’s easy to talk about it now because Tiana is doing so well and she’s thriving but for a lot of families, that’s not the case. For these families, when it rains, it pours. It’s a lot.” – Jackie Tillman
- “The choice that the family has to make, in the worst part of your life, when your child has just passed and now you have to make a decision. Do I donate or do I not? It’s hard to wrap your head around it.” – Jackie Tillman
Resources
- Charles Tillman Cornerstone Foundation
- Tiana Fund
- Ann & Robert H. Lurie Children’s Hospital Chicago
- Comer Children’s Hospital Chicago
- BerlinHeart.com
- Charles Tillman Cornerstone Foundation
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