Monday, June 25, 2007

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

57 comments:

Anonymous said...

Joe, Katie and Joella,
My prayers are with each of you! God Bless you through this touch time.
Thoughts and Prayers,
Eric Dell

Skyman said...

Thanks for setting this up. She is beautiful. Prayers continue!

Beth said...

Greetings from everyone at The Abraham Group, our thoughts and prayers are with you and your family.

God bless
-Elizabeth Mortenson

Anonymous said...

What a beautiful gift from God! I am so sorry you have to witness your first little miracle in pain. But God most certainly has his reasons and knows you are the best parents for this job. I am praying for Joella every day and so are the people in our church.

We love you more than you can imagine and will be with you every step of the way.

Love in Christ,

Esther, Steve, Kaleb and Jessica Maturo

Darla said...

Baby Ella has already touched and blessed more lives than alot of adults!

I have to tell you another "God moment" that just happened. I keep James 5:16 posted on my cubicle and just about an hour ago, I read it and thought of everyone who is praying for Ella. Then, I open up this blog and see that as one of your selected verses. I don't think that is a coincidence! It's God speaking through His word!

torrylyons said...

Joe and Katie:
Joella has been mentioned during every dinner blessing since Eric and I heard! We think of you three so often. I am glad you are at Children's. My sister and I are both miracle babies!! I wish you grace and am praying fo you all.

-Torry

The Leppards said...

Dear Katie, I hope you have a great and awesome day! I hope baby Joella gets prayed over a lot of times. I hope baby Joella will feel better!!!!
Love, Ellica!!!!
(6yrsold)
The video of Joella is awesome!! Thanks for letting us see her!! We love you!! Kevin & Danielle

Anonymous said...

Joe, Katie, and Joella --

We continue to pray for each of you and wish you the very best. We pray God's healing hands being on Joella. Thank you for the blog and the pictures of your beautiful daughter.
Moneyhun's

Anonymous said...

Katie & Joe - Joella is precious! What a beautiful baby. Please know you are in my daily thoughts & prayers. You have College Heights Baptist Church praying for you. Please let us know if there is anything else we can do to help. God is an amazing God & will do a might work through this precious life He has blessed you with. The strength you two have shown is an encouragement to me. May God truly bless you today.
Love - Nicole Rodolph (Zastrow)

Anonymous said...

Joe, Katie, and Joella,
My prayers are with you all! I know God has chosen the right parents for this job. My husband is a miracle baby and now has three gifts from God of his own. My verse to share with you all is They that wait upon the Lorf shall renew their strength; they shall mount up with wings as eagles. Isaiah 40:31 Cara

Anonymous said...

Murray Family,
"But as for you, do not grow weary in doing good." 2 Thess. 3:13

We all are praying as you asked, praying for a miracle, strength, encouragement and love to surround you all.

We love you,
Jess and Rob

Paige said...

Our thoughts and prayers are with each of you! God bless, John and Paige Turner

Anonymous said...

Joe, Katie, and Joella,
We are praying for you, and we love you. Thanks for the pics and video! She's a fighter!
In His all-sufficient Grace,
Rod and Deena

Melissa said...

joe, katie, joella, God's light shines bright in and through you. the strenght you display is a beautiful testimony. for when we are weak he is strong!

i am praying for you all. may God's strength carry you over and through and may his spirit fill you in power and with love.

Anonymous said...

Murray's,
You are in our thoughts and prayers as you go through these trying times. Stay strong and know that God's will will be done. Let us know if you need anything!

Jon and Lauren Mollerup

the dell family said...

Joe, Katie and Joella,
We have been so touched by your story and video of this child of God. We have prayed from the moment Eric shared your needs with us. Our church is also praying. God is good! We must wait upon the Lord.
God Bless,
The Dell Family

Anonymous said...

Joe & Katie,
Joella is a beautiful little girl. Ben and I are praying for you all.
Ben & Amy Hayhurst

Anonymous said...

Joe & Katie, Ella is beautiful! We are praying for you and will continue to pray you guys.

In Christ,
Gina, Jacob & Toni Witt

Sal R said...

Heavanly Father, Please guide Joella into a wonderful and blessed life. Please keep her free from pain and make her spirit loving and strong.

Thank you for blessing her with such wonderful and loving parents who have accepted their role as you have chosen

Thank you for choosing Joe and Katie. Please continue to guide them and strengthen them.

Please God, Bless Joella, Joe and Katie

Anonymous said...

Joe and Katie,

Like you, your precious one is a little warrior. Our prayers will continue for you all, and our love is yours for the taking. we love you.

The Lyons Den (Jason, Karen, Alicia, Chris and Kayla)

Rene said...

Katie, Joe and Joella,

Katie--- we have not stopped praying since we heard the news. We thank God for the amazing gift He has given you in your very first child, and we ask Him to hold her and you in His tender arms as you navigate the unknown. Most of all, we pray for a life free from pain for little Ella, and that you are able to feel the joy of being a family, together and whole.

If there is anything at all we can do, please don't hesitate to let us know. In the meantime, we hold you up morning, noon, and night in Colorado

Rene and Thomas Harrell (Clare, Elijah, and Nora)

Anonymous said...

Joe, Katie, and Joella;

What a beautiful baby. We are earnestly praying for each of you, that our Heavenly Father will envelope you in His love and bring healing to little Joella.

God bless,
Rick and Deborah Kitchens

Anonymous said...

Our warmest thoughts and prayers are with you all!
Love, Ali, Chris, Maddison, and Ashton Pfautz

Anonymous said...

Joe, Katie, and lil' Ella,

Thank you for the info on your beautiful baby girl. We are praying for you all!

Jeremiah 29:11

Geoff & Trish Smith

Anonymous said...

Dear Joe, Katie, and Joella,
We are thinking of you. God bless you all, especially your precious little girl.
Much love,
Brenda and Joe Simpson

Katherine & Shon Klegin said...

Joe, Katie, and Joella,

Please know that Shon and I are praying for y'all. We are amazed by your strength through it all and know that God will continue to give you the strength you need. Joella is a beautiful little girl. Please let us know if you need anything.
Love,

Shon and Katherine Klegin

Richard and Nimol Sheehan said...

Dear Katie, Joe and Joella: Nimol and I are praying for you all during this time. Our hearts go out to you! We hope Joella has less pain as the days go by. She is such a beautiful Bloom.

Anonymous said...

What a beautiful daughter Joe and Katie! Our thougts, prayers, and love are with you all.

Matt, Rebecca, & the entire Baier family

Becky said...

Joella-

You are so beautiful and are such a fighter! I am praying for you and that you will have no pain! Keep showing us how strong you are!! Your parents have such strength too! They are encouraging others as they share what you all are going through! I am praying for you and your parents all the time!!

Love,
"Aunt" Beckster

Mike said...

Your entire family will be in my prayers. Never hesitate to call.
Mike Gula

Anonymous said...

Joe, Katie and Joella, Please know that you have many, many people praying for you. God Bless you and Keep you. Jay and Anya Macklin

Anonymous said...

Joe, Katie and Joella
Thank you so much for the pictures they touched our hearts. God is good and a child is such a wonderful gift and blessing. We are praying for you all.
Chris and Barbara Elliff

Anonymous said...

Joe and Katie,
Thank you so much for sharing your precious and beautiful Joella with us. I pray for strength, wisdom, peace and courage for you all and healing and strength for Ella. One verse that has spoken to me over the past year is the following:
"Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will make your paths straight" (Proverbs 3:5-6). I have been comforted by this verse many times and it has brought me such peace. My prayers are with you all.
Mary Jane Pessaud

Colleen said...

Dear Joe, Katie, and Joella,

Joella seems to be such a precious little fighter! My prayers go out to you and the entire Murray family.

With love & faith,
"Aunt" Colleen

Colleen said...
This comment has been removed by the author.
Anonymous said...

Joe and Katie,
We were so happy to see that Katie could hold Joella. I know you know it, but she is such a gift and has touched so many. You guys remain in our prayers, please reach out to us for anything!
God Bless you,
Ryan and Angela Crockette

The Muncys said...

Chris and I both tear when we think of little Ella's problems, but really couldn't think of 2 better parents to help her and each other through.

Please let us know if you need anything at all. Dinner, to talk, anything.

Chris, Mel and Wil

Anne Z said...

Joe and Katie,
Ella is beautiful. Thank you so much for sharing her with all of us. Your faith in God is an amazing encouragement and inspiration to so many.
Love and hugs,
Anne

Anonymous said...

Joe, Katie and Joella,
Although I don't personally know you, you are part of my family at FBCA. I have been praying for you all and thought I would offer up a few verses of encouragement that, ironically, were part of my bible study yesterday ...

That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever. 2 Corinthians 4:16-18

Keep the Faith!
- Shannon Bowles

Anonymous said...

Joe & Katie,

Congratulations on Joella's birth! She is so beautiful & precious! Thank you for sharing her with us. I've always loved the name "Ella," and Joella has got to be the cutest name!! My prayers are with you for little Joella.

God bless,
Mary Beth Beasley

Anonymous said...

Joe and Katie,
Congratulations, you have been blessed with a precious baby girl. Your remarkable spirit and positivity will guide you. Our thoughts and prayers are with you all.
Wally and Suzanne Bilotta

MaryAnn Diorio said...

Dear Joe and Katie,

My heart is touched by your current trial. I am keeping Joella in my prayers. Let me encourage you with the Scripture verse found in First Peter 2:24--By the stripes of Jesus, Joella was healed.

Blessings,

Dr. MaryAnn Diorio

MaryAnn Diorio said...
This comment has been removed by the author.
Rachel said...

Joe, Katie, & Ella,

Thank you for sharing this with us. What a blessing! I am praying for strength for Little Ella and her wonderful parents.

Rachel Evans

Anonymous said...

Joe, Katie and Joella,
Your story and emails from your friend "Beth" to my friend "Carol" just came across my desk today. I am going to add your family to our church prayer chain here in Roanoke, Virginia (Cave Spring Baptist Church) so you can add about another 1000plus people who will be praying for you all. God Bless you all and we hope you can feel the comfort and peace that comes from knowing God is in control and that so many are calling your names out to him and lifting baby Joella up to claim His healing power.

Anonymous said...

We are praying for you all. This is Lisa Black (formerly Lisa Acrea from OBU). Gina told me about your baby and we have been praying for you all every night. I pray that you will enjoy your baby and that God would give you peace in this uncertain time.
Lisa

Roddys said...

My dearest Katie,

I pray that God will heal your precious baby girl. She is so beautiful, and I just know that she is going to shine for the Lord just like her mom and grandmother! I love you all so much and will be lifting your whole family up without ceasing. "And all things, whatsoever ye shall ask in prayer, believing, ye shall receive." Matthew 21:22 I praise the Lord that Joella has been born into a family that truly believes in the power of prayer. May God Bless You and hold you in HIS hands.

Jennifer Ooten Roddy

Anonymous said...

Joe, Katie and Joella,
She is just beautiful and with such beautiful hair!!
Our prayers continue to be with you! Joe, I am so happy to hear you sharing God's love with her so that she can hear those beautiful words from the voice of her own father;-- so special. Katie You are sooo beautiful holding her! I am sooo glad to see you get that opportunity to be close with her. God has amazing plans that none of us can possibly comprehend and we are here to be a part of His will, but the whole time you are on my heart I keep hearing these lyrics in my head from the soundtrack of Children of Eden --- ( the show that brought Ray and I together) I haven't listened to it in years but it is like a beautiful lullaby that keeps Joella close to my heart and my prayers streaming towards you all.

"In whatever time we have
For as long as we are living
We can face whatever comes
If we face it now as one
It’s alright to feel afraid;
I will hold you in the dark
All we know for sure is this:
Though the world could end tomorrow
You and I will be together
In whatever time we have

There are times I’ve been afraid
In a world that’s so uncertain
Then I feel your hand in mine
And there is courage in my heart
We will make the most of time
And at least we’ll be together
In whatever time we have"

God bless you and thank you for sharing her on line with us, your time is so precious and it makes us feel so much more a part as we help pray for God to calm her and grace her with whatever time she has.

All our love

Ray and Megan O'Connell (Wheeler)

Anonymous said...

Prayers are rising to our Heavenly Father from Texas for Joella and for your whole family. It has often strengthened me to know that as overwhelmingly much as I love my children, our Father loves us (and them) much more than that! I hope Isaiah 49:15 may give you some comfort and strength too. Even though we don't know each other, please know that we care deeply and are praying!

Anonymous said...

Katie,Joe and Joella, what a beautiful little angel and the name!! Guys I can't imagine what your going through, I'm praying for you all especially for Joella. I love you hopefully knowing that and that so many do will help you.
I am so glad you have this set us so we can see Joella and feel like we are there with you. God Bless you all. Love Melody Belfiore

Anonymous said...

Katie, Joe, Joella, Gale and Ron,

You are all in our prayers. Joella is so beautiful! Thank you for sharing this site with us. You are in our thoughts, hearts, and prayers.

Love,
Holly, Dustin, Matthew, and Jonah Hills

Anonymous said...

Joe, Katie, and Ella,
You don't know me. I work here at First Baptist and, therefore, I have received updates on how Ella is doing. I just wanted to let you know that my husband and I are praying for you all every night together. "Where two or more are gathered..." I pray that Ella would fulfill her purpose on this earth and I know that you two parents are minstering to so many others who lack the faith. God bless you all and may he give you peace as he controls all.
Katie DeVine

Anonymous said...

Dearest Joe, Katie, and Joella,
What a beautiful website! My thoughts and prayers are with you now and always.
Carly Jo Simpson

Anonymous said...

Dear Katie, Joe, and Joella,

I sit here looking at Joella's pix, and I thought of how you and your mom came to see Chloe through our window. I feel like I'm looking through that window now. We are praying with you...constantly! We love you! Joella is a beautiful name, was it a combination of two sisters that you knew in Casper??! Betty Jo...and Ella?? I think you are great and am so proud of you guys. Thanks for letting me look through the window at this precious girl.

Love,
The Reynolds, Rick, Betty Jo, Chloe, Kellie, and Seth

Anonymous said...

Joe, Katie , Joella, family & friends :

" God's Promise "

" God did not promise days without pain,
laughter without sorrow or sun without rain,
But God did promise strength for the day,
comfort for the tears and a light for the way.
And for all who believe in His Kingdom above,
He answers their faith with everlasting love. "

In Christ....a fellow believer.
God bless you all . Your sweet little daughter and family is in the prayers and hearts of many .

Deirdre Soanicki said...

Joe and Katie, Joella is beautiful! God Bless your family. I pray for her and you. Peace to all of you! With Love ~Deirdre~(spike's)

Anonymous said...

Dear Katie,
What a beautiful and strong girl!!! But it really isn't surprising that little miss Ella has such a strong spirit already. Knowing you as a girl in Casper I was always amazed at what a beautiful person you were... confident, strong, funny, smart, patient and most of all kind to everyone. I would find myself wondering how one person could have all those special qualities (and now that I am a Mama myself... how your parents raised such a great girl). Now I know that it was God's plan to offer Ella every bit of Himself here on earth through the grace of her Mama. She couldn't have a better place to heal than in your arms. I am praying for you and Joe every day that you would have peace that surpasses all understanding.
Love always, Amy Kroon (Nurss)