Gracie June

A Christmas baby she was, born on December 26, 2012. She came into this world without a single tear or cry. Born an angel. She was perfect to us, but to them, she was sick, VERY SICK. With very low oxygen saturations, a heart murmur, and possible Down’s syndrome, we were immediately transferred to Texas children’s hospital NICU in Houston, TX. Our world was shattered and turned upside down in just a few minutes.

Small infant with Koolen-de Vries Syndrome wrapped in a blanket and a newborn hat

Gracie June was born with pulmonary atresia with intact ventricular septum, a hypoplastic right ventricle, a hypoplastic tricuspid valve, a pulmonary valve that was almost completely shut…and that was just the heart. Within the first two weeks of life she had two heart caths and a stent placed. She was fed through an NG tube for about the first three months, later a gbutton placed. After weeks and weeks of waiting on genetic testing, Chromosome 17 mircrodeletion was our diagnosis. We were given the worst news…”your child may not walk, she may not talk, she will be mentally and physically delayed.” All I could do was cry, my only baby girl. She would struggle her entire life. She may never have what I have, or marry, or experience life like us. And bully’s…. As I lay my head in my husbands arms, I was defeated!!

Gracie June is her name and KOOL is her thing!

Over the last 18 months, we’ve had lots of struggles. From heart issues, hypotonia, failure to thrive, gtube fed, poor weight gain, gastro reflux, kidney reflux, epilepsy, physical and mental delays, just to name a few :/ therapy consumes our entire week, physical, speech, and occupational. I told the docs they should have a room for us to overnight stay in because we are there so much during the week. On May 16th, 2014, Gracie had her open heart surgery. One we’d been waiting months for. They performed a 1.5 ventricle repair (modified Glenn shunt) and successfully fixed my sweet girl- from blue to pink, and pink is definitely us!!! We’ve fought hard and some how made it through.

On a positive side to all of this, Gracie June is pure. She may not know all that’s going on, but she wakes up every day with a smile on her face. She loves to love, play, dance, and occasionally she lets out a few squeals. We don’t walk or talk or even crawl but we scoot around likes it’s nobody’s business. We are all learning sign language daily for her to communicate with us- puppy is our favorite!  I had a nurse tell me once that she was brilliant and I believe it! She is the most gentle, loving soul I’ve ever met. And she melts our hearts daily! I think that she is an absolute gift from God and inspires us everyday with her courage and strength!

Baby girl with Koolen-de Vries Syndrome and her two brothers all in patriotic 4th of July clothing

Gracie has two older brothers, Grady (5) and Dalton (2) who adore her. They don’t care about all of the tubes and wires or that she can’t interact like they can. Nobody can make her giggle like Grady can. He tells everyone about how brave she is, and shows off her battle wounds to just about anyone. We’ve all learned compassion and patience and how precious this life is. So, DEFEAT ISN’T AN OPTION. She will conquer battles and overcome obstacles in her own way and most importantly on her own time and we are okay with that. Koolen-de Vries Syndrome is us now. And as crazy as it sounds, I’m not sure I’d change it.

What more could any mommy or daddy want?! Gracie June Mastel, our miracle, our fighter, our KOOL KID! If you’d like to follow Gracie June’s story, check out her Facebook page HERE!