Tessa Agnoli, diagnosed with a complex congenital heart defect, will celebrate her 6th birthday on February 5th. She will receive a special package filled with a teddy bear and other treats for her birthday thanks to the Casey Cares Foundation.
Tessa will be Casey Cares’ 150th birthday celebrated in 2024. She recently returned home after granulation tissue removal and biopsy.
Tessa spent most of her first year of life in the hospital, having been born with LTGA, VSD, ASD, Pulmonary Atresia, Aortic Stenosis and a Hypoplastic Right Coronary Artery. Her longest hospital stay was 338 days. Tessa was listed as Status 1A on the transplant list in July 2018. She later received a heart from a donor in February 2019 later making it home May 2019.
The Agnoli family learned that their daughter’s heart “at our 20-week anatomy scan. We went through a few different diagnoses, but they were able to truly see all that was wrong after birth. We were told that she was the only person they had seen with her specific heart anatomy. Transplant was never even mentioned until she was 4 months old and went into heart failure. We had not prepared ourselves for that, says Courtney, Tessa’s mother.
Casey Cares provides ongoing, uplifting programs to critically ill children and their families. To this day after joining Casey Cares in 2018, Tessa has loved going to the zoo and the Aquarium along with getting birthday presents and pajamas.
But to pick her favorite wouldn’t be difficult – unicorns all the way. Courtney, states “The girls have loved every activity so far, Unicorn World was a big hit. Unicorns are everything in this house!”
Courtney reflects about her daughters, “Having three girls is so interesting! One day they are best friends and the next they don’t want to play together. They have a very sweet bond! Our oldest, Noelle, looks out for Tessa at school and is her protector. Tessa and our youngest, Juliette, are besties and they love to play and like to take pictures of themselves hugging!”
As Tessa’s mother, Courtney lists Disney On Ice in 2021 as her personal favorite.
“We were just starting to come back out into the world after really isolating Tessa due to Covid. But the most amazing part was watching the joy in Tessa’s face,” she says.
“Tessa had never really experienced anything like it. At that time, Tessa was also working on communication and wasn’t speaking a lot. I looked over while Elsa was singing ‘Let it Go’ and Tess was singing right along. My husband and I looked at each other so surprised and happy, we had no idea she could do that! It made me want to cry!”
Courtney finds that, “Everything about Casey Cares is amazing! There is a lot of support just within the community. We often see other families that we’ve met along our journey and it’s nice to reconnect.”
“A moment that stands out is really while Tessa was in the hospital waiting for her heart transplant. She was there for 11 months, but we really loved having the opportunity to do fun activities and events with our older daughter who was 3 at the time. She loved the lunch cruise with Disney Princesses! It was a really stressful and emotional time, and just having these events to look forward to meant everything to our family.”
The mother notes the difficulties of being a parent to a critically ill child.
“We face a lot of challenges with having a medically fragile child. We try to keep life as normal as we possibly can, especially because we have two other children. We often have to cancel plans at the last minute due to health issues or aren’t able to afford something fun because money has gone to prescriptions or hospital parking.’
She continues, “We cope by trying to stay as positive as we can. We lean on our support system. We’ve also met so many other amazing families through the hospital and other organizations who help us get through because they know exactly what it feels like. We also know that even though our life has a lot of ups and downs, we are extremely fortunate that Tessa is here with us.”
Today, Tessa is reaching new milestones all of the time.
“She is an absolute miracle. Her doctors have told us many times, that with everything she’s been through, she shouldn’t be here. But with her strong, feisty spirit, she was determined!” she states.
Courtney continues, “Tessa just started walking independently a few weeks ago, she talks nonstop and she is just a joy to all who know her! She is currently in Kindergarten and working on catching up on her skills. She has made friends and her classmates love her!”
Casey Cares knows that for a critically ill child, each birthday is a special milestone celebrating life. For the children in our programs, it not only marks another year, but it also demonstrates a great achievement. Casey Cares staff and volunteers work hard to send out each of our kids a special birthday package through our Birthday Blast program – we send over 1,000 a year. This simple act of kindness delivers joy and hope to our kids who are undergoing treatment.
Since Casey Cares began counting in 2001, Casey Cares has given over 10,100 birthday packages to kids.
“Our birthday program is especially important to us because we know how critical each birthday is to children who are fighting for their lives every day,” said Casey Cares founder and executive director Casey Baynes.
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Content and photos courtesy of the Casey Cares Foundation
About the Casey Cares Foundation:
Founded in 2000, the Casey Cares Foundation is a 501(c)(3) non-profit that provides little moments and lasting memories for over 1,500 families with critically ill children by organizing ongoing family-centric events such as tickets to sporting events, concerts and museums, pajamas donations to hospitals, group parties, birthday surprises, and more! We serve families in the Mid-Atlantic region, parts of the Midwest, and Florida. For more information, visit https://www.CaseyCares.org.
