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Katie Grace’s Story

F.R.O.G  Fully Rely On GOD
Blessed Be The Name of The LORD!
I am Katie Grace I am 10 and I have Pulmonary Hypertension a rare and terminal illness. But I have Faith that God will see me through. Thank you for being here to visit me ;)


 I have now started the 4th grade. Pulmonary Hypertension has given me a bumpy road to go down but it does not stop me. I am always glad to share a great story. I love being a girl and doing what girls do.
It is my dream to be a veterinarian when I grow up but I have made a promise to never move away from mommy and daddy. I  love my big sister Savanha and love to hang out with her and her friends. I have the Lord in my heart and enjoy Christian music. I also enjoy doing things for "PH awareness" and "
Organs are Us"

Mom: My favorite quote from Katie Grace is when she was asked when she will get her trans plant and she said " I do this for my friends that have already had theirs there will be a cure for PH before I get mine"
Her long brown hair and big blue eyes are a compliment to her award winning smile.
Thank you for visiting her here.

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Katie Grace

Latest Journal Update

We are Back

I know it has been awhile so that means there is a lot to tell,

So Katie Grace's PH began to progress and once it did there seemed to be no slowing it down. We tried oral meds she started wearing her oxygen more and going to school less. She was finding it hard to keep up with her friends. Then in November of 2013 things went from bad to worse. They then proceeded to work her up for the ACTIVE transplant list. It was not what I wanted to hear, I had been praying for the miracle cure and this was NOT IT, There were A LOT of trips to the hospital, doctors and labs. March 3 2014 she was Actively listed, After another trip to the hospital in April she rode a smooth road along but it was easy to see it was getting harder. 

Her sprits didn't let that stop her though.She continued to enjoy times with her friends and cross walk, On June 12th she walked across the stage and received her 5th grade diploma.  On June 13th  she and her friends had a marvelous day swimming and celebrating the beginning of summer with so many things planed to do. That night Savanha had her bags prepared as she was headed to opportunity camp to be a counselor. All things were ready for the Summer to begin.

June 14th 3am our phone rang "We have a Perfect match" said the voice of Dr, Conrad. I was floored and we all cried as we prepared for the next step in our journey. It was a perfect match and all things considered Katie Grace was doing well no signs of rejection and she is healing very well. The big surprise came when her PHriend Cullen also received the call. Friends and family have came to visit and she has made new friends here in the hospital. We call them the REAL RED BAND SOCIETY, Katy Doak also a former PHriend now transplant buddy they have been able to support each other Joined by their 3 siblings Savanha. Aidan, and Emily they have formed a bond they will keep for a life time.

Thursday when while in a bronc/biopsy her lungs collapsed and landed her back in the hospital, I believe this to be a minor set back although it is far from minor Katie Grace does not like to be held down to a bed and is ready to go home. She will soon start willing herself to get better and God has given her a VERY STRONG will.

Thank you for all your continued support and prayers.