Today we’d like to introduce you to Patricia Salome.
Hi Patricia, so excited to have you with us today. What can you tell us about your story?
My youngest daughter was 9 when we learned that she was dying of a congenital heart defect. She received a heart transplant 19 days later. She discharged with many restrictions on her new normal. As she grew from a 9-year-old to a teenager she adapted to every challenge before her. She managed all of her care with me as her parent and advocate. There were many challenges to Ellen’s new normal. She struggled with the daily medications, the physical and mental limitations and always presented herself with a smile, positive emotions shared with everyone. Ellen was a mentor to her peers. She became an All-American Cheerleader, played golf, was President of Drama Club, learned how to ride a horse, surf and went to her first concert. Her heart transplant was done at Nemours Children’s Hospital. Ellen followed all of their guidelines with frequent visits and admissions. Many sad moments led us to wins that we cherished. Ellen was loved and she knew it completely. I knew a day would come soon that she would need a new heart. It was decided for her that she would leave this Earth on 4/14/25 by cardiac arrest. I knew that day that my love was too much to put aside. The gift of life that Ellen was given brought me 5 extra years of joy with her. I don’t take a moment for granite. I established the Ellen Salome Memorial Fund so that I could do something with the love that I have for Ellen and pass along joy to others. I am blessed that there is so much support that our fund is able to provide scholarships, sponsorships and small gifts of joy throughout the year. I intend to do all I can to inspire dreams and honor legacies through Ellen’s memory and honor her heart donor Dawn.
Can you talk to us a bit about the challenges and lessons you’ve learned along the way. Looking back would you say it’s been easy or smooth in retrospect?
Most people don’t understand how hard it is to be an organ recipient or to have to be a care giver to a pediatric heart warrior. Childhood and teenage life is hard enough, Ellen had to negotiate with living with a gifted heart, a scar that she could not ignore and at times explaining what the scar was from. One of the hardest things that Ellen struggled with in the beginning with peers that knew of her transplant was constant questions. They came because most people don’t share health challenges. Most people don’t know a child who is a heart warrior. Sadly, some children, babies never go home after they are born or diagnosed with some heart conditions. In Ellen’s case when she was diagnosed it her only options to live, were to have a mechanical heart or a gifted heart. The risk of organ rejection was a constant reminder; it sometimes got in the way of normalcy for Ellen and her parents. Ellen needed to regain her strength and protect her immune system. The mental toll took a lot from her as she entered her teen years. Ellen needed many admissions to check her heart and make sure it was healthy. Frequent invasive heart procedures and labs, and images were so time consuming and interruptive. Advocacy was a challenge to allow her to live her normal life with school, friends and passions, especially with clubs and theater. Pain, discomfort from needles, the scar and the memories might have been the biggest challenge that Ellen and her family needed to deal with daily. Peer relationships may have altered also because the lack of understanding or empathy just wasn’t there for her age group. Overall, it was as smooth as it could have been because of the family and physician support.
As you know, we’re big fans of you and your work. For our readers who might not be as familiar what can you tell them about what you do?
I became a nurse in 2002; it was my calling since I was a young girl. I started my career as a Labor and Delivery Nurse. Eight years ago, I left the bedside just before Ellen got sick. I continued to work with the same health system and used my clinical expertise to build their electronic medical record software. I have been proudly supporting Women’s Health for the system and most proud of the tools that I have built to care for women’s heart health, an obstetric care. Remote glucose and blood pressure monitoring for high-risk obstetric patients saves lives. The programs help to ensure that new moms go home with their new babies and remain at home as they should. The work that I do supports care teams that believe in heart health. I am blessed to be in a position of advocacy with dedicated staff so that my community has the best opportunities to prevent and support cardiac wellness.
Are there any important lessons you’ve learned that you can share with us?
Most people will say life is short, but I don’t think they truly get it. Not like me anyway. In the blink of an eye a journey can split into something unimaginable. What I have learned from my journey is that every split I have experienced I can look back and see that I have been prepared for the change. I have come to believe that I am in the right place for the right reason even if I don’t like it or approve of it. Acceptance has been the most difficult thing for me to overcome in my journey. there are still days that I struggle with the finality of changes I have to accept. The most important thing that I have learned is that I need to give to live and because others give me opportunities, I can continue. That brings me joy.
Pricing:
- Donations are always accepted
- Some events have some price tag to cover costs.
- Our fund has not had a big price ticket event.
Contact Info:
- Website: https://ellensalomememorialfund.my.canva.site/ellensalomememorialfund?fbclid=PAZXh0bgNhZW0CMTEAAaeLeML3AfUu_FnKcJbfg2hScy3Z0bEDnYO3RfbEi8uTrlEnvDFIS-4EZsww8g_aem_SmahbQHMPtcnOyRhUorGaw
- Instagram: https://www.instagram.com/ellen_salome_memorial_fund?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw%3D%3D
- Facebook: https://www.facebook.com/profile.php?id=61579273663987
