Little girl dying from a terminal illness.

https://www.facebook.com/princesssophiagracesjourney

Sophia's Journey

Sophia Grace is two years old and she has a terminal illness, Batten Disease. It will take away Sophia's childhood, and then it will take away Sophia.

The latest update from them:

The doctors think that Sophia may be near the end of her life. We are going home to keep her comfortable. The doctor advised that he does not recommend bringing her back to the hospital again because they cannot do more for her here than we can do at home. Thank you for your continued prayers.


When doctors give up you really have to question. There's many more cases of kids that are just like this one's that have died or are dying and there's hardly any cure for batten's disease because it's not even heard of by many doctors. Can you believe that?

Life expectancy for them varies while it usually takes them during childhood but once it's diagnosed, it goes downhill for them until they slowly reach death. It's very painful, especially with the parents having to literally watch their kid slowly die right in front of them. It takes away all the kid's abilities that they once had during the process. I'd suggest to google for more if you're interested to know what it is.

I ask that you guys can at least keep Sophia in your prayers. Perhaps things can start looking up while the doctors pretty much threw in the towel for them - it can happen. Otherwise let's hope if it is her time to go that it'll be peaceful for her and her family. Like I said, this is only one case out of many with kids just as Sophia and it's pretty sad her life may be cut short like this. Pray for all of them.

For this situation, I am standing on the Bible verse, "What is impossible with man is possible with God." (Luke 18:27) Sophia's life is in God's control, not a doctor's. If it is the Lord's will for her to live, it doesn't matter how bleak the worldly situation looks. The Bible says, "it is the purpose of the Lord that will stand." I pray in Jesus' name that Sophia is totally healed and is able to live a long, prosperous life on earth. Amen.

Keeping this little girl and her family in my prayers in Jesus's name.

God bless
pickles

People need to pray in faith, And faith comes by hearing God's word, [The Bible] Rom 10: 17.
One need to get the revelation about healing, So they can have faith the receive healing.

So here what God said about healing.

Isaiah 53: 3--5.
V3, Jesus was a man of sorrows,[ The Hebrew word means, "Pain], And aquainted with grief, [Hebrew, Sickness].
V4, SURELY He, [Jesus] has borne our sicknesses and carried our pains.
V5By His stripes were are healed.
V10 says God has put Jesus to sick, Just like Jesus was made to be sin so we could be made the righteousness of God, Jesus was made to be sick [suffer] so we could be healed.

Matt 8: 1--8 is all about divine healing for the physical body, Then in v17 it says,
"That it might be fulfilled which was spoken by the prophet Isaiah, [Ch 53], Saying, Himself [Jesus] took our infirmities and bare our sicknesses".

1 Pet 2: 24.
"By His stripes we WERE healed".
The "Stripes" are the lashes of the whips that Jesus had.
And that was we can be healed.
Just like Jesus has taken our sins, He has taken our sicknesses, And just like we receive salvation by faith, We can receive healing by faith.
In Mk 16: 18, Jesus says the believer shall lay hands on the sick, and they SHALL recover.

James 5: 15, Says the prayer of faith SHALL heal the sick.


"Whatever you ask in My name", Has a meaning of, Command, [Whatever we command in Jesus name],
So you command the reason why the girls is dying, To Go in Jesus name .

The Greek meaning to, "Tell your mountain to go", is, It will hear, understand, know it has to go, And goes.

One of the things that causes us to overcome, In Re 12: 11. Is the word of our testimony, And the meaning of that is,

A God given Power given to the one who speaks with authority" .

Praying for healing in this impossible situation. Also comfort from physical pain for Sophia and peace from mental anguish for those who can only watch. Help them Lord.

In the name of Jesus I pray for Sophia to be healed and delievered from the terminal illnesses. Amen

Im here Father God with my heart wide open.....thanking You for sophias cure. thanking You for keeping her close.....thanking You
for keeping her family strong....thanking You for the miracle that is coming their way......I just thank You for your mercy....
In Jesus,s name ......amen....

The dead or dying...

Allow me to post briefly on here, anotheruser:

1) My dad died from cancer, as "terminal" as it is.

2) I "lost" a daughter I spent a full year to accept (legally and emotionally) she was mine.

3) I have seen God healing people with leukemia and other terminal diseases.


Death is just a temporal spiritual state, as illnesses. This painstaking situations might help us all to think life differently, up to the point our LORD Jesus cried -shedding tears- at Lazarus death.

Lord Jesus, I pray for Sophia who is battling batten disease. Please comfort her parents and relatives in this difficult period of their lives and please make sure that if it is her time to go that she may rest in peace in Jesus name Amen

I know that it's hard for you, I know that your walk in faith is strong.

May she not die, but live and declare the works of the LORD!

Update...

Sophia is dying and is given a few weeks to live, if even that. Her organs are starting to shut down. The parents are considering to take her off of her feeds to lessen the time and pain, which I'm not sure if they're sticking to it or not. Please pray that her journey to the afterlife is not as painful when she takes her last breath and that her family can go through such a time of grief. It shouldn't be happening but there's not much that can be done. This is only one of many kids who fight and eventually die of the same illness. This is the youngest I've encountered so far - two years old.


Sophia's Journey
19 hours ago · Edited
We met with our hospice nurse and discussed Sophia's decline. The expectation for her life right now is a couple of weeks. We are overwhelmed with sadness as we experience what we have always known was to come. Tomorrow, the hospice doctor will be coming to assess her as well and discuss our option to stop feeds altogether. I am trying to disconnect my head from my heart because they want two different things. I am asking God for strength in making these decisions and for Him to help me make the choice that satisfies His will. I am not prepared to answer questions right now. I'm sorry for that but I'm just not up to it at this time. Please just pray for my family and especially my Sophia.


https://www.facebook.com/princesssophiagracesjourney

When Sophia dies there will be angels carrying her to heaven. This is a very sad story. I had to make a decision once about my late wife. This is a very hard thing to do as you are torn in different directions. I have asked God to provide clarity of thought in this most difficult of decisions to all concerned. Everyone is in my prayers.

Continuing to pray in Jesus.

God bless
pickles

Poem that was made by someone who's loved one has or had battens. Remember, all meet the same fate...

What a beautiful poem, a tribute to our Angel Ali. This was written by Emily's grandmother, Emily has batten as well. Grab a box of tissues, this is so very touching. Thank you so much Lisa Collins!!!!

ALI'S PRAYER FOR THE FAMILY AND FOR BATTEN DISEASE


Now I lay here, I’ve gone to sleep; an Angel now without Batten Disease. I am normal and healthy, and very much at peace; no longer ill…I’ve been set free. Now I can see, and I can speak…our love and memories we both shall keep. I can fly and I can run; I can eat, and have some fun. My days not filled with tremors and jerks. No more medicine only sunshine bursts. Stay strong for me now, you’ll see me again. From heaven I am with you...beautiful Angel Wings I fan. Until then be patient, and remember each day: You cared for God’s Angel in spite of the pain…an earthly Angel given especially to you. I know you did everything you could do. You loved unconditionally and I still love you too. But in Heaven there is still much work to do…Our journey isn’t over; only separate paths we take…I know my time was brief on earth but Heaven couldn’t wait. Father heal their hearts for me and help them understand. The Angel on Earth went home you see…and it’s all part of your plan.

Watch over those I left behind…family and friends…be with them each night. Bless my nurses, doctors and therapist alike, for without them Father, it would have been harder to fight. Send a cure and send it fast…a miracle Lord…a disease of the past! Bless the Angels you sent to help me each day…the prayer warriors who prayed and prayed. Bless those who battled to win my war. My mission, my goal is still Batten NO MORE!!!

Bless those who spread word of this rare orphaned disease…that most have never heard of and many choose not to see. Prayer, awareness, and a map along the way…to honor those with…remember and locate. They network through the BDSRA…to never give up hope standing strong among their pain. Together they shall see, NOT ONE will die in vain!!! Please God, please help them win this fight! I will beg of you Lord each and every night. Through strength and support, the families unite. They each play a part…this battle their plight.

Reward those in Heaven who gave of their life and the families on earth who sacrificed. Love, hope, and faith and a prayer crusade…let the wings of Batten Angels carry this plea far away. A cure, a treatment we beg you each day. We give thanks to you Father, the glory…and praise. Flying high to the Heavens in perfect unity; delivering this prayer, I’ve earned my Angel Wings.

Amen…and God speed…Love for you always, Angel Ali from me.

Written by: Lisa Collins grandmother of Emily Collins (Late Infantile Batten Baby Map Disease -Yantis, Texas 02/26/13). “EMILY’S BATTLE WITH BATTEN’S DISEASE” PRAYERS AND LOVE FOR EACH OF YOU!

Also keep this young boy in your prayers list as he's fighting Batten's disease as well and his family is going through grief and despair of him as well. His name is Jovan.

https://www.facebook.com/JovansFightWithBattenDisease

There's many more kids but this is one that I'm following that is still alive and I don't know if I can follow any more knowing that one day they will be gone. If I find any more, I will post or make a new topic or blog listing them. I'm still in shock after I heard of Ali and Sophia not having that much time.

Please spread the word as well since more people need to realize that diseases such as this exists. There's doctors who never even heard of it before and that says a lot. Let's help bring a voice for these kids since they can't.