COTA for Ceara

Our Story

As far as we know Ceara’s story begins back in December 2019. She had back to back pneumonia and never seemingly recovered. Always been the one to take on a challenge she fought through her symptoms of fatigue and breathing issues. For over a year and a half she fought, removing her self from activities such as working in our local pizza shop, dance classes, and hiking. School even became hard for her. We visited many doctors, even taking her to Duke University trying to figure out the weirdest symptom of them all, her red or purple “socks”- the strange discoloration of her feet and lower legs. No diagnosis was ever given and she was just passed from one physician to the next.

In August 2021 she began having a new symptom, chest pain. She describes the feeling as that of a foot cramp. We took her to our local urgent care who passed her on to the emergency department and then had a phone conference with a pediatric cardiologist at the urging of us, her parents. He reviewed her tests and symptoms and scheduled a visit for two days following. At that point he recommended doing an echocardiogram and investing further. And then recommend further testing and consulted with the pediatric cardiologists at Levine Children’s in Charlotte. A heart catheterization was completed on September 1st 2021 and we were told on the 2nd that she would need to undergo a heart transplant.

We are people of strong Christian faith but the news was shocking and completely rocked our world. We knew for some time that something was wrong and that Ceara wasn’t her healthy active self but this was the last thing we were expecting to hear! We came to Charlotte on September 10th for her transplant consultation. The following Thursday the 16th we came back for what was supposed to be the beginning of the workup process.  Ceara nearly passed out during the blood draw (24 vials!) which was unusual for her since she had been a blood donor previously. And after we were honest with the team about her chest pains becoming worse and more frequent she was admitted to the hospital at Levine’s to be put on IV medications and to speed up the workup process. 

Her official diagnosis is Hypertrophic Cardiomyopathy with Restrictive Physiology. They believe at this time that it is due to a genetic mutation brought on by a viral illness. Her father and I are also undergoing genetic testing which is necessary as we have two other children: Sophie age 7, and Sterling age 5. We were, needless to say, not excited at the thought of her undergoing a heart transplant but we are so excited for her to now be on “the other side” post transplant and look forward to being out of the recovery stage and living a healthy and full life. She received her new heart on October 16th, 2021. Thanks to this precious gift we look forward to seeing her being able to dance again and enjoying hikes with the rest of the family.

As far as hospitals go, it is mostly enjoyable. I, her mother, am primarily staying with her and her dad is staying home to work and take care of the siblings. We have a lot of back and forth visits now with many more in our future post reco very as she will undergo vigorous and frequent testing, especially in the first year following the surgery. The funds raised for COTA in honor of Ceara will help with transplant-related expenses, such as lodging during this time as well as the medications she will be on for the rest of her life. COTA funds are available for her lifetime.

Ceara is hoping that one day she will be able to return to Levine Children’s hospital- not as a patient- but as a nurse. She was attending a high school/college co-op program prior to her hospitalization and will finish the program after a total of 5 years with an associates degree in nursing. She has a sunny outlook about it all and is taking it all in as life experience that one day will make her an even more excellent and compassionate nurse. We are extremely proud of our daughter and all of the professionals here are very complimentary of her attitude. We have no doubt that God has big plans for her life and this hard detour will only make her better for it!

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax-deductible to the fullest extent of the law.