Uniquely Me Board- About Us
The more you like yourself, the less you are like anyone else. Which makes you unique.
I was born and raised in the Bay Area and moved to Texas in 2006. I have two beautiful boys; Nathan and Nicholas. Nicholas was diagnosed at birth with TAR Syndrome in 2017. After nearly 20 years in the corporate financial sector I left to care for my family and care for Nicholas during his multiple transfusions and therapies. It was time to start a new chapter and we followed our hearts to form this foundation in the hopes to bring people together and help new families as they begin their journey. In my spare time I love to listen to music, see movies and spend time with family and friends.
Jordana is the mother or two spunky and delightful boys and wife to Tom. When not spending time with her family, working or volunteering with her different organizations, she likes to travel, read and bake. She is honored to be the treasurer for Uniquely Me and is so excited for the organizations beautiful future.
I was born and raised in Rockwall County where I met my now husband, Klint. I graduated with my business degree from UTD in 2014 and I have worked for the Costco Regional office for 4 years. We have two wonderful 3 year old twin boys, Jace and Easton. Easton was diagnosed with TAR Syndrome at birth. He has undergone multiple transfusions and 6 major surgeries. I’m very proud to serve on the Uniquely Me Board and to help bring awareness to limb differences and TAR syndrome. In my spare time I enjoy game nights with family and friends, and shopping.
Christopher is a native Texan and comes from a 20 year history in the corporate IT field with a degree in Business. He is also the proud father of two boys, the youngest having been born with TAR syndrome. He is passionate about his work with the nonprofit to serve the community and to give help to new families. In his spare time he enjoys running, music and spending time with friends and family.
Mrs. Waller is an experienced Medical Social Worker with over 20 years working in the hospital. Her journey began as an infant as she was born in Vietnam at the height of the Vietnam Conflict. In the beginning living in an Orphanage & having to overcome multiple medical issues of her own by surviving Poilo, Measles and Rheumatic Fever she became a caregiver at the age of 10 caring for her father who had a Traumatic Brain Injury due to car accident. In 2015 Piece by Piece Care Management, LLC was established as an Thanks independent Care Management Company. I take the “Google” out of the search in Advocating for my Clients in finding the “Right level of care at the Right time.” www.piecebypiececare.com Piece by Piece Care Management is committed to helping others navigate the healthcare system. In working in conjunction with The NFL PA DFW Chapter Healthcare Initiatives she also heads up The Healthcare Committee to assist Retired Professional Athletes consisting of Former NFL Players navigate through the Healthcare System through Events and Networking meetings. She is a Graduate of Leadership McKinney Class 2016. Member of McKinney Chamber of Commerce since 2015. Vice President of McKinney Morning Pride Lions Club.
Dr. Journeycake completed her undergraduate degree at Rhodes College in Memphis and returned to Oklahoma to graduate from OU Medicine. She completed her pediatric residency training at OU-Tulsa and then moved to Dallas to complete her pediatric hematology/oncology fellowship training as well as her Master of Science in Clinical Science from UT Southwestern Medical School. She remained on faculty with UTSW from 2002 until 2018 when she returned to OU Medicine where she is now Professor of Pediatrics and the Interim Division Chief of the Jimmy Everest Center for Cancer and Blood Disorder at Oklahoma Children’s Hospital. Dr. Journeycake is nationally recognized for her research and clinical expertise in pediatric bleeding disorders and thrombosis and has received federal and foundation funding for her work in the prevention and treatment of catheter-related thrombosis. She is currently the Chair of the American Thrombosis and Hemostasis Network. Although her research focus has been in hemostasis and thrombosis and she is an advocate for all blood disorders and childhood cancer, her clinical areas of focus is benign hematology in all aspects.
In 2017 we brought our second son into the world. We found out during our 16 week ultrasound that he would have a limb difference and was missing both his arms, but no other diagnosis. We spent the rest of the pregnancy wondering what Nicholas’s life would be like and how he would adapt. It was a very hard time for us, there was so much we didn’t know and we felt so unprepared. We didn’t know what we would need or what the next step would be. It was in the NICU, that we first heard of TAR (Thrombocytopenia Absent Radius) . The next few days were a whirlwind of information; Nicholas had fractures in both his shins, he had no knee joints, and was needing multiple platelet and red blood cell transfusions. As a new mom and dad to a sweet boy with TAR we wanted to learn as much as we could. However it was very difficult finding information, and what we could find was old and didn’t give us much hope. Most doctors had never seen TAR, and some hadn’t even heard of it.
Nicholas is now three and he is unstoppable. We are so proud of both our boys. What we have learned in this journey is that we have a fun loving, amazing and outgoing little boy who will do anything he puts his mind too. He is unique and perfect, just like so many other amazing families we have met. People are all different and unique, this isn’t a weakness, they arent “less than”. These differences are strengths and should be embraced. Our hope is to help new families on this journey. We are here to help raise awareness, and to give families, friends and individuals with TAR and rare disorders a place to come together and share their stories, find resources, and information.
Welcome to the uniquely awesome community!