Luke’s Legacy Grant

Here is her story written by her mother Dakota Miller:

Myli is a super sweet, fun, sassy and outgoing 12 year old girl.

At 13 weeks gestation, we went to find out what our baby would be, a baby girl. A few days later we received a call from my OB that we needed to see a specialist ASAP. We got in with maternal fetal medicine only to go to our first appointment and receive devastating news that we weren’t sure what our life would look like. Myli had a Cystic hygroma and I had excess amniotic fluid. During the next months we saw maternal fetal and Dr. Katash regularly and those days were gut wrenching. We did an amniocentesis and lots of tests only to receive no answers. I had to go 3 different times to get 4 liters of fluid drawn off each time and the last time I needed fluid drawn off, I just so happen to be 37 weeks and it was time to deliver and the date just so happen to be 12/12/2012. What a special birthday for a special girl-our Myli Marie Miller was born! We were told she may not be able to sustain life outside the womb and we may not bring a baby home, but our God is so much bigger than anyone else. Myli was born and immediately taken to the NICU where she literally only spent THREE DAYS. Her dad and I went to every feeding and diaper change. They were wanting to give our baby a feeding tube, but we did everything we could to avoid it. We fought so hard to get our girl eating and the struggle was real with many hospital stays, missed diagnosis and lots of therapy. June 2, 2013 I’ll never forget the day the doctor emailed me and wanted me to go into the office. I immediately called and said that I couldn’t wait another second. I needed to know our diagnosis. She then informed me that she had minimal knowledge about this diagnosis, but it was Cardio Facio Cutaneous aka CFC. Shortly after, I remember getting a Facebook message from someone who had a child with CFC and what a God send that was. They informed me about a conference that would be happening in Orlando, Florida in July, and we immediately started planning to attend. I walked in with my 7 month old baby girl with no clue what our future would hold. It was an overwhelming experience to say the least, but also the best learning experience and support group I could ever find. It lit a fire in me and we have never stopped fighting for her well being since then. We have always made sure our girl is living her best life possible. Myli has done tons of therapy since the beginning of her life. We have traveled the world for therapists and doctors just trying to give her the best quality of life possible.

CFC comes along with a lot of medical issues. Myli has severe cardiomyopathy, asymmetrical hypertrophy, ventral septal defect, chairi malformation, low muscle tone and developmental delays. Myli has had approximately 6 brain surgeries and 4 heart catheterizations. No matter what, she still always has a smile through it all and gets so excited when she realizes we are at Texas Children’s Hospital. She is a well loved little girl that can light up any room and can brighten any day.

Myli loves school, her friends, her favorite aide Mrs. Chris. She enjoys going to therapy, playing outside with her brothers, watching kids YouTube on her iPad, spending time with her grandparents, swimming, going shopping and wondering down the dirt road. She loves all animals and has no fear. We try to make sure Myli gets to experience all things that are safe for her and never want to limit her because of her challenges. She even hiked a mountain in Arizona one year!

This diagnosis has brought many challenges, but also has allowed us to meet many amazing people, gain tons of friends and has taught us how to advocate for people with disabilities. It has also taught us to celebrate the smallest victories and that our life doesn’t have to look like everyone else’s. Our moto is “where there is a will, there is a way” and to “never settle for less and always push to go further.”

Gif od is bigger than anything else and being Myli’s parents has been so rewarding.