Your Story Matters: This is Aunika's Story
Deciding where to start when trying to convey the journey we are on as a family is always a difficult one. To put everything into context, here is some back story. Upon discovering that our wish had come true and I was pregnant we soon realized that I was in fact pregnant with twins. We were beyond surprised and overjoyed at the news. Unfortunately, it was not to be and early on in my pregnancy, I miscarried Aunika’s twin. I was an emotional wreck as losing a child due to miscarriage is deeply heartbreaking. Still, to this day I wonder who the precious soul would have been and mourn the loss. After that upset, I was lucky to continue my pregnancy with Aunika and it was smooth sailing. All ultrasounds and check-ups were normal. The only inkling that I had that something may be wrong; was that I never felt Aunika have hiccups in my belly and was therefore not swallowing her amniotic fluid. I mentioned this to my doctor who assured me everything was fine and I shouldn’t be worried. Needless to say, currently Aunika must be fed via a feeding tube in her stomach as she cannot swallow without aspirating into her lungs.
But I digress, here begins our story:
Once upon a time, two years ago on the 23rd of September our Aunika Rowan Kerr was born. To most on social media, she is known as “The A.R.K.” or “A.R.K. Strong”. She was delivered via planned c-section and, once out of my belly, it was very apparent to the doctor and attending nurses that something was wrong. Aunika had difficulties breathing and was unable to swallow without fluid entering her lungs. Her small right ear (microtia) was the second indicator to us that something more was going on. Thankfully for the wonders of science, Aunika’s newborn screening results flagged her as immune deficient and we were able to put her into strict isolation precautions. Fast forward through a plethora of testing, including a full genetic work-up which found nothing abnormal, and our girl officially became a true bonafide medical mystery.
When we embarked on this medical journey with Aunika, I knew that the universe was speaking to us and gifting us with a plethora of beautiful gifts amidst the fear, worry, stress and heartache we were experiencing over our precious girl. Once the initial numbness and barrage of testing and all-consuming fear had subsided, I was finally able to have some mental clarity, during which time my soul spoke to me and said I could no longer live in this state of fear because it was not helping Aunika or myself, in any way that was healthy or beneficial. I knew that the Universe and Aunika had chosen her parents very carefully and wisely because it needed people that would advocate strongly not only for her but for other medically complex children and parents in similar situations.
My vision of an Athymic community was born when Jason and I had no one to talk to or reach out to who truly understood our situation. (Athymia is what most accurately describes Aunika’s situation. Your thymus is what educates your t-cells to fight infections properly. Essentially the t-cells are the students and the thymus is the school house. Aunika was absent a thymus therefore had no school house to educate her t-cells.) If not for our incredibly supportive family, friends and community, and my personal intuition and drive to not accept death or “I don’t know” as an answer from her doctors, I would not have been able to find and contact Dr. Louise Markert and push for my daughter to be accepted into her research study of very rare patients requiring a thymus tissue transplant. I felt like I was in the dark searching for a light at the end of a tunnel that I knew was there, but I just needed to find a spark. I refused to accept that there was nothing that could be done for my daughter. I refused to accept that, in this day and age, no one knew how to help her and save her. The voice in my head kept my hope alive with its repetitive instructions of “There is a way and you need to go research and you will find it. JUST KEEP LOOKING!” When I came across Dr. Louise Markert’s published medical papers online through my narrower and narrower google searches, a light literally blazed to life at the end of that tunnel and my intuition, that beautiful voice that has never steered me wrong, screamed out, “THIS IS HER!!!!!” I wrote down her contact information at Duke University Children’s Hospital in North Carolina, and called her immediately. Not only did she return my phone call, but she was amazed at the journey I had gone through to find her. After hearing Aunika’s story, she quickly agreed that my daughter was one of her very rare patients and that we needed to get her to Duke as soon as we could.
Fast forward to almost two years later (a year longer than the doctors said our daughter would live), and she is here with new t-cells coursing through her body. She still has numerous challenges with her breathing and feeding, but developmentally and physically has successfully played catch-up and finally started to lead the life of a child not confined to hospital beds. She is a thriving two-year-old, and we couldn’t be more proud of the strides she’s made, and the strong girl she is becoming. As she grows, so do I and those that love her.
My vision has grown beyond the purpose of saving our daughter, and has became a calling that I cannot ignore. I want to do something so that other parents and their children do not have to go through such frightening and lonely times, not knowing if there is hope for their child or not. Many knowledgeable medical professionals with sound advice are not aware of the transplantation process of thymic tissue (it is still currently a research based study and not yet FDA approved) or its growing success rate. I want to find other parents like ourselves, and children absent a thymus like Aunika, and build a support community for each other and future parents/patients to come. I want to create a forum that can reach out to the medical community and public to educate them on athymic children and the thymus tissue transplant process so that they know it is an option, that it works, and our daughter is living proof of that.
I was fortunate enough to meet the CEO of the company funding Dr. Markert and her thymus transplant research when he flew in for Aunika’s transplant surgery. He sat down with Jason (my partner) and I and asked us about our journey, how we found Dr. Markert, and what we wanted to see going forward. We both expressed our deep desire to help others and form a support network with the long-term goal of developing a foundation as well as to educate the population and medical community. He agreed to help us facilitate that need. Fast forward one year later, lots of conference calls, emails, organization and phone calls between myself and my contact at the company funding the research, along with the small community of parents that had opened up to me after Aunika’s transplant… and the first ever ATHYMIC GLOBAL GENES Chicago Conference was born. To see my vision and year of hard work come to fruition in Chicago was, for Jason, myself, and 17 other families of athymic children, absolutely phenomenal and my heart was so full. The video you see below is the result of my vision and the generosity and help of Global Genes and Enzyvant who helped me bring our vision to life. We now have an official support network established, are reaching out via social media and other networks to support families, and educate the public and medical world.
Please share to assist us in getting the word out because these children and their parents need our help. If we can find even one family who needs our help, it will all be worth it. From my heart and family to yours, thank you. Never lose hope. The Universe will provide, and there are beautiful learning opportunities and moments throughout the ups and downs in this life on the school that is Planet Earth. Listen to your heart and that voice we all have that is our intuition. It is in tune with the Universe and wants to help. My experience is proof of that.
Please watch the beautiful families that are now part of our family, and the time we had together in Chicago.