Celebrating Joella's Life

Dear Family and Friends,

Thank you for visiting Joella Gale Murray's blog site. Katie and I are so blessed to have this little princess in our life despite the tough news that she has a very rare skin disease, Epidermolysis Bullosa, which only affects 50 out of 1,000,000 births in the US. We certainly did not expect nor plan for Joella's condition, given that Katie's pregnancy was a textbook one with excellent check ups and doctor's visists. We believe the amniotic fluid in Katie's uterus was healing little Joella all throughout the pregnancy, and it is a miracle she survived being born. But we have accepted the fact that God has chosen us to be her parents to the best of our ability.

Currently, she is being cared for at the Children's National Hospital in Washington, DC by some of the best doctors in the world. The doctor's main form of treatment is to keep her skin hydrated and to keep her blisters on her extremities from contracting any infections. At this point, her vital signs are terrific. Her little heart and lungs are working beautifully; its just her skin, the largest organ, which is impacted by the disease.

We visit her daily and watch her move, open her eyes periodically, and pray for God's healing and comfort. She is in a general state of pain all over her little body which is being managed by morphine pain medications. She recognizes her Mommy and Daddy's voice and moves to show us she knows we are there.

At this time, Katie and I understand that each day we have with her is a gift from above. The good Lord could take her home at any time, but also could allow her to have a full life with treatment. We just don't know. There is no cure for the disease at this time, yet research continues to be conducted.

What we do know is that we have grown tremendously in the knowledge that God is in complete control of Joella's, Katie's, and my life. The Holy Spirit is sustaining us with the comfort of hundreds, if not thousands of praying folks like yourself, all over the country showering kind words and encouragement. We understand that this news is very hard to digest to all, and folks want to help us in any tangible way they can--all we need and ask for at this time is prayer for Joella's condition to improve and that she would be able to have a productive life free from pain. Katie and I will not be shy to ask for anything else that we need if and when we need anything.

The many emails and calls are so good to receive. They are wonderful. I close this post with a few Bible scripture verses that have been impactual to Katie and I since Joella's birth. Thank you for all of your love.

John 10:10 (We deemed this verse Joella's life verse) "...I have come that they may have life, and have it to the full."

Romans 8:28 "And we know that in ALL things, God works together for the good of those who love Him and are called according to His purpose."

Proverbs 19:21 "Many are the plans in a man's heart, but it is the Lord's purpose that prevails."

James 5:16 "The prayer of a righteous man is powerful and effective."

James 1:2 "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything....vs. 12 Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him."

Isaiah 26:3 "You will keep in perfect peace him whose mind is steadfast because he trusts in you."

In Him,

Joe and Katie Murray