Hello, All!

I am asking you all to be praying for the newborn son of some friends of mine from church. Their son, Cash, was born on the 26th of November and within a few hours, flown to Seattle Children's Hospital with unknown complications. His parents, Justin and Jenni, received an official diagnosis yesterday of a very rare genetic disease called Zellweger Syndrome. I've read a little bit about this disease and honestly, don't understand it, but what I do know is that they were told that Baby Cash's prognosis is one year or less. Justin and Jenni are amazing people and have incredibly positive attitudes about this situation. They know if God chooses to heal their son, that He will and if not, that somehow, Cash's life will bring glory to God.

If you're the praying type, please be lifting this family up (they have three older children). Otherwise, positive thoughts would be most appreciated! Jenni is still with Cash in Seattle until he is stable enough to come home and they have a care plan in place. The mountain passes this time of year can be challenging, so please be praying for their travels as well.

Thank you all so much!!

Sending good thoughts for all of them! ((hugs))

Seeing something like this makes me think just how small my issues truly are. Positive and uplifting thoughts for them all...and for their safe travels.

Prayers coming. Also, you may want to direct them to Nancy Guthrie. She is an author (Holding onto Hope)and speaker. She and her husband lost 2 children to Zellweger's Syndrome. She has written on how to deal with grief and loss and hopefully could be a blessing to your friends.

ETA: Ms. Guthrie recently spoke at the Desiring God Conference: The Works of God - God's Good Design in Disability.

Thanks, Purple Pride! I will most definitely look into that book. Possibly purchase it for them and have our pastor give it to them if/when they're ready. Much appreciated!

Positive thoughts coming their way from Pennsylvania.

Prayers being lifted up for Cash, Justin, and Jenni.

They have amazing strength. Prayers for them and baby Cash!

Prayers from Southeastern Louisiana.

Prayers of healing, strength and understanding for all of them!

Will add that family to my prayer list. Thanks Busy Bee.
I'm glad they are God fearing and loving people as this will surely test them.

"And now just as you trusted Christ to save you, trust him, too, for each day's problems; live in vital union with him." Colossians 2:6

My friends have a meeting with all of the specialists at Children's Hospital today. They are putting together a care plan for Baby Cash in the hopes that Mommy and Daddy can bring him home soon. He's stable right now and doing as well as can be expected. Even the doctors are doing research now to see what they can do to help and treat the symptoms of this disease. It's just so rare and there hasn't been very much research as of yet, so there are very limited answers. Jenni did say that they got a new attending doctor that is absolutely wonderful and they had an immediate connection because they are of the same faith. I think it's a comfort to them to have a doctor that they can relate to so well.

Busy Bee,

John Cameron Bruce was born to my wife and me in 1997. He had a rare genetic disease and lived with us for only 55 days (all of which were spent in the NICU). So, I can empathize with what your friends are experiencing now. I will be praying for them and Cash. Since our son died we have seen amazing displays of God's grace to us, and I trust that will be true of your friends too -- whatever the outcome and however difficult the road will be.

My wife now runs a state-wide non-profit organization (Oklahoma Family Network) that mentors families in such situations. And I have written a book, From Grief to Glory, that chronicles the stories of many Christians from past ages who have walked this same road. Here is a link to my web site From Grief to Glory which tells some of our story.

Blessings and prayers from OKC.

[PS - It's always a joy for me to send out books as gifts to other parents and, hopefully, to get acquainted with them. It's part of the healing process.]

My friends met with the team of doctors and specialists on Friday to determine the best course of action for Baby Cash. Baby's CO2 levels are extremely high because his breathing is so shallow. Because of this, they were given the option of putting in a traech and letting a ventilator do some of the work for his little body. This would mean 2-3 more months in the hospital then a live in nurse if/when he is allowed to go home. The other "option" they were given was to put Baby on high flow humidified oxygen and see if the CO2 levels improved. After many tears and prayers, they chose the oxygen. Baby's CO2 levels had not improved as of yesterday morning. However, I did just get a text that they will be bringing Cash home tomorrow. At this point, they're choosing to continue to pray for a miracle. My heart breaks for them!!

Please continue to pray! Thank you!

I cannot imagine how difficult this all must be for them.

I think many people see this thread and say a silent prayer but don't have any idea what to say or do to try to be a comfort ( I for one cannot allow my mind to even imagine it).
So here is a prayer for you and for them for God's Holy blessings of healing and understanding.
J Bruce, for you and yours as well and I hope that you can be a blessing on them.

I agree!! I rarely comment on a prayer request but always pray. I've been posting updates as I've gotten them so that those that are praying will know how to pray or specifics for praying. I can not express how grateful I am (as well as the family) for all the people that are lifting them up. Thank you all!!

Ditto with tears and lots of prayers for Cash and his loved ones.

Yes that's the case. I don't know what to say; however I can pray for this family.

Prayers for the family coming from Illinois. May they find peace with the situation and place their trust in God.

My heart aches for your friends. Sending many prayers from NM.

Well said Bankbb1. I struggle each time with what words to say. I did not even know what to say to J Bruce after visiting his amazing site.

Glad little Cash can be taken home and I will pray right along with them for their miracle.

Thank you again, everyone! Baby Cash is coming home today! They have a couple of training exercises and lessons that they need to go through this morning (feeding tube and basic care) and then they'll be traveling home. They have to drive through a couple of mountain passes, so please pray for safety in the winter weather.

Prayers coming their way from PA. I cannot imagine what these parents are going through. I have learned to thank God every day for my 5 healthy grandchildren.

Sending my prayers to them and for all of you that are praying with them, and to you as well Busy Bee for adding all of us to their prayer chain.

The grace of God will get them through this, but none of us can heal the pain that will be ripping through them throughout this time in their lives. So many of us lose children from womb to adulthood, and there is just no way to comfort other than prayer. I am glad their doctor is of their faith and that will make all decisions at this difficult time easier I believe.