Elizabeth's Story

Our daughter Elizabeth was born prematurely in 2013 after a difficult pregnancy, and she was diagnosed in 2015 with ZTTK Syndrome. She was one of the first cases identified in the world, which propelled our family into advocacy for ZTTK Syndrome.

We were overjoyed by every birthday, because we have had many close calls with her, including the day she was born . We always like to say that, “Birthdays mean more when you have to fight for them,” and Elizabeth has certainly fought for each of her birthdays. We are so grateful for our precious, miracle, rare, rainbow baby, and she is truly the light of our lives. She is also the Queen of our household.

Elizabeth is such a joy to our lives and to everyone she meets. Her laugh is contagious, and her smile is infectious. She is strong, brave, and beautiful, and she is such a gift to our family and to this world. We love to watch her continue to learn, grow, and thrive. She moves along her own path at her own speed, and we could not be prouder of her and all that she has accomplished.

We know that if it were not for the careful attention and dedicated care from her multiple medical teams, our story would be very different. So, we continue to share Elizabeth’s story. Her story is one of hope. Her story is one of love. Her story is one of survival. Her story is one of perseverance. Her story is one that we share with the world whenever possible, and the joy she brings to our lives every day, is possible because of all of those involved in helping us to keep her with us. It has sometimes been a very hard fight, but it is always worth it. We have learned to fight for and advocate for whatever she needs, no matter how steep or difficult the task, because we want the very best for her and cannot imagine a world without her in it.

We are forever grateful for our little billion-dollar miracle baby. She is truly our ray of SON-Shine. She also has a big brother, Celtan, who is a great joy to our lives and adores his sister. We are so grateful for our ZTTK Family, and also for our community for rallying around our family time and time again. This journey with Elizabeth has been full of heartache, but overall it has been full of so much joy and beauty. She has made our lives so much more enriched and has given us a fresh perspective on life and being happy despite odds being stacked against you.

We want all ZTTK Families to know that you are not alone, and that our SON-Shines are truly real-life superheroes. In our house, we believe that the blessings outweigh the burdens, and this has certainly proved true for us. Elizabeth has shown us that the little things are the big things, every inch-stone achieved, every new day, all of it is a gift. Our little warrior princess is one of our greatest blessings.

Eternal love and hope from our family to yours. ~Jason, Tara, Celtan, and Elizabeth Hackwelder