Lily C.
Lily C. – In November 2022, Lily was diagnosed with severe Pulmonary Hypertension (PH) at just seven years old. She was immediately started on three medications and had a hole placed in her heart to help relieve the pressure in her heart and lungs. One of these medications requires continuous infusion through her arm, which only lasts 2-8 weeks. Each time a new site is needed, it is a very painful process for her. This has significantly impacted her daily activities like bathing and getting dressed but also her favorite activities like cheerleading and going to Kings Island as she tires quickly. Later, we discovered that Lily was born with the RASA 1 gene, making her the only known person in the world with both this gene and PH. This has made her a unique case for her cardiologists and pulmonologists.
In January 2024, Lily contracted the flu and spent 36 days in the ICU. Her recovery was challenging, and her heart and lungs deteriorated further. An MRI revealed over 50 Arteriovenous Malformations (AVMs) in her lungs, a condition she did not have before January 2023. Consequently, she was listed for a lung transplant in March 2024. Now nine years old, Lily must wear oxygen all the time while waiting for new lungs. Despite her condition, she remains the strongest little girl you will ever meet. She has matured quickly due to her experiences but has always had a heart of gold and an old soul. We have been through a lot lately. I’m a single mom raising two special kids—Lily with PH and my son, who has autism. It’s been hard working full-time as an ICU nurse at Cincinnati Children’s, taking her to all her appointments, and getting help for my son. We live paycheck to paycheck, and our bills keep rising. Our Duke Energy bill alone is almost $400 a month as we have to refill her tanks daily, and her medication co-payments are piling up. It’s very hard trying to pay bills, keep our lives together, and be present for my kids. My 76-year-old mother moved from Florida to help me. She’s renting out her place while staying with me and has been my rock during all this. I wouldn’t have been able to do this without her. She is Lily’s co-lister, as you need two people to care for her before she can be evaluated for a transplant. She had to meet with nine teams and get trained. I have also been very fortunate to have my work friends, high school buddies, close friends, and family help us out. It truly takes a village.
When Lily receives her new lungs, she will face a challenging recovery period. She will be hospitalized for 2-4 months and then home-schooled for a year, unable to leave the house for an entire year. Despite these limitations, we have been striving to make every moment special for her. For her Make-A-Wish in May, we had to adjust our plans from a Disney trip to a shopping spree due to her transplant listing restrictions. Post-transplant, Lily’s quality of life will change significantly because of the immunosuppressant medications she will need to take. This means she won’t be able to enjoy some of her favorite activities, such as being around horses, eating sushi, swimming in lakes, or cheerleading for her school. However, in true Lily fashion, she will adapt and continue to live life to the fullest, finding new ways to enjoy her passions and stay positive.
We are a nonprofit public charity with 501 (c) (3) tax exempt status.
Julie Caddell – 5809 Gold Dust Dr. Cincinnati, OH 45247 – 513.218.3678
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