Nephew rare skin disease

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Merciful Lord, we have already seen many small miracles in this young man’s life. We know that your promises are trustworthy and that You never forget your own. We ask continuing improvement of this child’s health, as well as peace and Divine comfort within his family. We ask this mercy in the name of the Child to be born unto us this midnight clear, our Lord and Savior Jesus Christ, Who is God with us. Amen! Alleluia!
 
My nephew is doing better. He isn’t out of the woods, but his white blood cell count continues to grow. I didn’t realize until just the other day that he is only the fourth child with this disease to receive this treatment. While bone marrow transplants with stem cell from cord blood are not all that rare. Using this procedure to help children with Recessive Dystrophic Epidermolysis Bullosa is. If all goes well he could be released to the Ronald McDonald house next week. He still has to master taking oral medication and this is a big worry. So far that has been a huge issue with him. It usually takes bone marrow patients 21 days to begin to produce white blood cells and it only took my nephew 7 days, so he is far ahead of schedule. I am sure all the prayers have helped. Words can’t express how much we appreciate all time spent in prayer for his cure.

God Bless!
 
We are asking you step up the prayers. He has had a turn for the worse. He has a temp of 105 and they aren’t sure why. We are asking that Jesus to please help him fight this infection.

Thank you so much!!!
 
Lord, we beseech You to remain always with this precious child. Shield him beneath Your wing from all harm as he undertakes a cure for the terrible condition he suffers. We know not what his future holds, but we know Who holds his future. We place our faith and trust in You alone. Amen. Alleluia.
 
He was given large doses of antibiotic last night and the fever came down a bit. the disorder he has makes it very serious when dealing with infections and fevers. Because he has open soars all over his body he is prone to infection. His body heat is important because those soars that are healing become more itchy when he is heated up. They have to be very careful he doesn’t become to agitated because he then rips at his dressings and makes more soars on his body. His stomach has become lazy due to chemo and he hasn’t felt well enough to even open his Christmas Presents. Medically he has had some great leaps, but we are still very far from over. One of the most positive things is that tests came back that his sister’s marrow is producing 100% of his blood cells. After his soars have begun to heal they can begin to lighten the dressings. It will take a long time for his skin to repair itself and become less fragile. He has had dressings on his body all his life.
 
Still praying for this young trooper! May the Lord graciously bring him healing and the discovery of a new and amazing life. Amen.
 
Hail Mary,
Full of Grace,
The Lord is with thee.
Blessed art thou among women,
and blessed is the fruit
of thy womb, Jesus.
Holy Mary,
Mother of God,
pray for us sinners now,
and at the hour of our death.
Amen
 
Thank you so much for the continued prayer. I know it has helped. He is doing fairly well. He continues to have blood in his urine and nausea here and there. They p(name removed by moderator)ointed the source of the yeast infection he had floating around in his system and that is now gone, but he still has a virus of some sort.

He has been able to get short passes to go to the Ronald McDonald house the last three days. They decided he needed a break from his room because he was getting depressed. His muscles are weak from little use in the last month and they are trying to get him up and moving more.

The biggest hurdle right now is that he won’t take his oral medications. If he didn’t have Recessive Dystrophic Epidermolysis Bullosa they could force it down him. So far they haven’t found anything he wants bad enough to reward him for taking his meds. and they haven’t been able to take anything away from him to get him to take the meds. either. They are also struggling with his mouth care. He can’t use a toothbrush and refuses the sponges. I must say he is a little spoiled but in some ways his being stubborn also shows us that he is on the mend.

Please pray that he will begin taking oral meds. Pray his parents get more stubborn with him and are able to find a way to better parent him in this time. They continue to believe they can only get him to do what he decides to do so the little guy really runs the show.

Thank you so much for the prayers! Oh, other than the virus in his blood, his blood cell count looks good. The next step is to see if the protein, that connects his skin to his body, will begin to grow.

I will update you as soon as I can, but am in the last stages of this pregnancy and am being keep very busy with doc. apt… We have lost several little ones in the past and so we are being very well watched with this baby. Forgive me if I am slow to get you updated.
 
Prayers going up for your nephew to get well. As well as for his doctors and nurses and all of his family.

Our Father, who art in Heaven,
hallowed be thy name.
Thy kingdom come,
thy will be done on earth as it is in heaven.
Give us this day our daily bread,
and forgive us our trespasses
as we forgive those who trespass against us,
and lead us not into temptation,
but deliver us from evil.
Amen

Hail Mary full of grace the Lord is with thee.
Blessed art thou amongst women
and blessed is the fruit of thy womb, Jesus
Holy Mary, Mother of God
pray for us sinners now
and at the hour of our death.
Amen.
 
As one who must be constantly reminded to take daily oral meds, I can certainly identify with him! The blessing is that there is an end date for the meds, however remote that may seem. Let us thank and praise God for the amazing progress he has made. He is allowed to be somewhat spoiled, as he has always been a special case, both in Heaven and on earth. He may very well find that having a normal life is much less special than the pain which went before.

Continuing to pray for the completion of the miracle we have witnessed in progress. Amen!
 
ANCHORING FIBERS!! My nephew has anchoring fibers. Only 28 days out and he has anchoring fibers. In case you are wondering what I am going on about, EB lacks the anchoring fibers that stick normal skin together. Prior to the BMT, he had none. Now he has some, not a lot but some. All the Glory to God!. Praises!
 
Everything has been running fairly smoothly until today. My nephew has been admitted back into the hospital with a temp of 102. We would appreciate prayers that this is just a little bump in the road and not something serious.
 
I’ll be remembering your nephew in Mass this morning.
I thank God for the recovery he has made so far, and will be praying regarding this setback
 
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