Updated: Nov 8
It's a heartbreaking story.
This is a child with congenital spina bifida. He was abandoned by his parents three months after he was born. He was then sent to an orphanage, where he spent six years. He was adopted by American mother Carrilynn.
In 2014, he was adopted by his mother Carrilynn from the United States. In this way, he crossed the sea with his adoptive parents and started his new life in the United States. Unfortunately, however, once again, he was diagnosed with severe aplastic anemia this year, and a bone marrow transplant was his only way to survive. But the first bone marrow transplant was unsuccessful. Because there was no ideal matching bone marrow donor, the hospital had to use the bone marrow of this donor with only 80% match for him again. Surgery is scheduled for Tuesday, October 4.
The mother is exhausted and the child is full of fear.
Can this bone marrow transplant that has already failed once be successful? How long will his life last? Carrilynn asked everyone to pray for them. Will miracles happen? This article was written on the occasion of the child's 15th birthday. Let's go back to his short and miserable life to this day.
1. Severely disabled at birth and abandoned by parents
On October 1, 2007, in Jiaozuo City, Henan Province, China, a baby was born and came into this world. "All men are created equal", this is a concept that is respected by the world, but this is a luxury that this child cannot experience.
When ordinary children are discussing their own starting line, this child simply cannot start. More specifically, not only can he not be able to start, but he can't even stand for life. This child suffers from congenital spina bifida, which is doomed to spend his entire life in a wheelchair.
However, the physical pain was not enough. On January 3, 2008, which was the third month and three days after he came to the world, he was abandoned by his biological parents. He was placed on the south side of the intersection of Yingshi Road and Donghuan Road.
After a kind person called the police, he was sent to the orphanage in Jiaozuo City, Henan Province. There he began his first life in this world.
He was later transferred to Jiaozuo Menglin Children's Home, a care and education institution focusing on orphans and disabled children in Jiaozuo. Living with a group of children with different types of disabilities.
2. Thanks Mom, Create a good luck
In 2012, an American couple named Carrilynn and Tom came to an orphanage in Jiaozuo, Henan to adopt their first Chinese child, Janayah. At that time they brought gifts to all the children in the orphanage. They handed it out to the children, but out of so many, this was the only one who came over and gave this strange American woman a hug while saying, "Thank you, Mom."
In that moment, Carrilynn's heart was hit.At that time she thought that this child was born for her.At the same time, she realized that this child could also share the same experience, culture and heritage with the Chinese daughter her family had adopted. The child also had spina bifida, which made him understand the daily challenges her daughter faced. All this allows him to connect with her family in a special way.
So she immediately wanted to adopt the child. But adopting the child was not part of their plans for that trip to China. Moreover, the international adoption process cannot be completed in a short time, it usually takes more than a year. So she could only give up.
More than a year after returning to the United States, Carrilynn has been unable to forget the child. That angel-like smiling face has been haunting her heart. Although the child could not stand for life, she still made up her mind to adopt him.
Finally, in 2014, Carrilynn completed all the adoption formalities. Together with Tom, she came to Jiaozuo, Henan, and made a special trip to adopt the child they had been missing. They gave the child a beautiful English name Josiah.
Carrilynn said: "The name Josiah means "God will support and heal," and as we walk through this journey together as a family, we will stand by that God's promise.
This child found a mother for himself with the words "thank you mother" back then!
A child who was born disabled and was abandoned by his biological parents won his own mother's love with his own efforts! In this way, the Caroline couple crossed the ocean and brought Josiah back to their home in the United States. On a small farm called Sound of Joy in Indiana, USA, Josiah lived the happy family life he should have enjoyed.
In this family, he not only has his parents who love him, but also 6 siblings. (The Carrilynns have adopted seven children).
Josiah has started a new life. Although he is still unable to stand for the rest of his life, in the wheelchair that cannot be separated from him, he can already play ball, play and enjoy the happiness he should enjoy at his age
3. unpredictable catastrophe
Misfortune befalls him again!
Earlier this year, Josiah suddenly fell ill and was diagnosed with severe aplastic anemia after going to the hospital for examination. A bone marrow transplant was his only survival.
After many difficulties, the doctor finally found a donor with an 80% match for him. Although this match was not ideal, Josiah's condition could no longer be delayed. He survived the pain of myeloablative chemotherapy, radiotherapy, the pain of bone marrow puncture, and various side effects, just for this transplant.
April 28 this year is a day to remember for Josiah, his family, friends, and the many people who love him. On this day, Josiah received a bone marrow implant. The marrow blood, the color of life, flowed drop by drop through the central venous catheter into Josiah's body. It condenses her mother Carrilynn's unfailing love for him, and also her faith and hope in God.
The two weeks following bone marrow implantation were filled with unimaginable hardship and danger. In the isolation room, Josiah had various catheters inserted all over his body, and his fever persisted. Due to the lack of immunity, various infections lead to urethral hemorrhage, abdominal pain and diarrhea, and oral ulcers. He was unable to eat and was only kept alive by infusions...
The good news is that the results of the bone marrow aspirate test bring good news-the implanted bone marrow blood shows signs of starting to regenerate new blood cells! His white blood cells, especially neutrophils, started to increase!
By the third week, the test report showed that 98% of his blood cells were already from a matched donor, and his white blood cell count rose further. If the situation continues to stabilize, he is expected to be discharged from the hospital soon.
However, Josiah continued to suffer from various ailments for the next two months. His constant high fever, mucositis and urinary tract infection caused excruciating pain that doctors prescribed 6 pain relievers. The nasogastric tube made his nausea and vomiting worse, making it difficult to eat normally. In addition, he often needs platelet transfusions to aid in blood clotting. Because Josiah was a high-risk patient, doctors feared that he would develop graft-versus-host disease and that his previous efforts would fall short.
In the past few years, Josiah has often gone to the hospital for tests and surgeries because of his physical disability, but this teenage boy can always treat him with an optimistic attitude. However, the lengthy hospitalization and persistent drug side effects left him feeling depressed and depressed as never before. He felt that all the treatment would only make his body worse and that he could not be discharged from the hospital or be with his family again.
Nevertheless, by mid-June, Josiah's white blood cells and platelets had reached a safe area, and the body could recover only when the red blood cell index increased.
As his physical condition improved, the number of catheters on his body was reduced to 3. The doctor then agreed that he was discharged from the hospital. But because he and his mother could not return to their home far away from the hospital because they needed to go back to the hospital for testing three times a week, they checked into a suite in a nearby home-style hotel.
Hospital paramedics brought their necessary medical equipment. Mum Carrilynn learned central venous catheter maintenance and infusion procedures. She worked around the clock to take care of Josiah. What's even happier is that his older brothers and sisters can take turns to visit and accompany him every week.
At the end of June, Josiah went to the hospital for regular follow-up visits. Looking forward to good news, he got a bolt from the blue! ——All of his cell indexes are dropping a lot, which brings him back to the danger zone!
After further testing, doctors found that his body's abnormal immune response was attacking normal cells and wiped out nearly all of his new blood cells. This has been the donor's blood cells in Josiah's body for nearly 2 months. This news is really depressing!
They had to be admitted to hospital wards again. For the first time, the child shed tears when he saw his always strong mother. In their hearts, the mother who could always overcome difficulties in their hearts was devastated by this blow.
But Carrilynn did not give up. She held back her tears and asked the doctor to formulate a short-term response plan again. She would do everything possible to save Josiah's life. The medical plan this time includes chemotherapy and apheresis, while evaluating the feasibility of another bone marrow transplant.
Poor Josiah had not recovered from the last bone marrow transplant and was still suffering from abdominal pain and nausea, and now a new round of chemotherapy has started, which made him vomit uncontrollably.
During the hospitalization, Josiah's body condition was up and down, and various indexes fluctuated. - This fourteen-year-old boy has suffered from the first day he should not have suffered. Now he is full of unknowns and fears about life. Hope seems to be fading away, life is passing little by little. Time and time again, he could not help asking himself, when will this journey of suffering come to an end?
The cytomegalovirus infection came back aggressively, and the medication brought more and more serious side effects - kidney damage, electrolyte loss, blurred vision... In addition, doctors found his stomach engorged and swollen, clumps of dead blood cells . The latent herpes virus has re-emerged...
During the more than half a year in the hospital, my mother watched Josiah go through all kinds of pain, and her heart was cut like a knife. One new disease after another, and one bad test result after another means they have to spend more days in the hospital.
Josiah's health continued to deteriorate. His body has been unable to produce new cells, and there is even a phenomenon of backlash from time to time. Doctors finally ruled that his bone marrow transplant was a failure! - Josiah is back on the brink of life and death.
The doctor finally decided to choose "enhanced bone marrow" implantation, and the original match donor agreed to do it again. The surgery is scheduled for Tuesday, October 4.
Carrilynn handed the results of this surgery to God, and the heart-wracked mother asked everyone to pray for the following:
(1). Effective in the treatment of thrombotic microangiopathy (TMA), allowing Josiah's blood pressure to continue to drop. Cytomegalovirus levels were kept to a minimum and retinopathy continued to shrink.
(2). The "Bone Marrow Enhancement" operation succeeded by God's mercy. So that I can take Josiah home. If unsuccessful, please give us another chance to transplant.
(3）. Josiah was able to overcome anxiety and depression, leading him to believe that he would eventually leave the hospital.
(4). Keep the whole family healthy so that they can visit in the hospital. Safe traffic on their way to visit. When I'm not home, the other kids can still feel Mom's love for them. My heart longs to go home!
4. One side is in trouble, all sides support
After Josiah's illness came out, insiders in China and the United States acted immediately, and soon set up a rescue team across the ocean.
Initial work focused on finding him a better-matched bone marrow donor. Spreading the news and advertising it is the first step.The people of the transoceanic Josiah rescue team are working around the clock. Various rescue methods have also been continuously proposed spread.
One public account after another began to forward Josiah's story. Of course, I am not reluctant. The two public accounts in my hands, "US-China Consulting" and "China-US Business Summit", both published articles introducing Josiah in the first time. At the same time, it also assists other self-media to forward from our official account.
The Carrilynn family suffered a huge financial burden in order to treat Josiah. So in addition to giving them moral support, donations can also relieve their financial stress. Volunteers set up a program for Josiah at Children Hope International to raise money to help them pay for accommodation, transportation, and meals in addition to health insurance. (See end of article for donation information)
The purpose of our China-US Charity Foundation (A Perfect Love) is to help families who adopt Chinese disabled and abandoned babies, so we immediately issued donations.
Cheers to Josiah, a child under 15. Help him overcome his fears!
The postcards were sent in English and Chinese to the hospital where he lived in Indiana.
In the process of this rescue work, a plan has attracted everyone's attention, it is emergency family search. If the biological parents of this child can be found, it will undoubtedly be the fundamental solution to the problem. Because the bone marrow blood is the most perfect match.
So everyone's attention was focused on Jiaozuo City, Henan Province.
The news spread to the public security system of Henan Province, and a staff member proposed a plan - now report to the 110 police in Jiaozuo City, the police can notify his family to collect DNA, and then compare with the Y family library in our public security. The worst thing is to find his clan in Jiaozuo.
This method sounds good, but the Jiaozuo City Public Security Bureau will accept the police report of an American who is thousands of miles away? Should we ask American parents to contact the Chinese embassy in the United States, and then ask the embassy to contact the Ministry of Public Security?
Are you going to entrust a local person in Jiaozuo to handle the police? Who can be entrusted to Jiaozuo? Would Carrilynn agree to commission a stranger to handle this? Will this mother, who is under great pressure, go through this procedure? It turns out that everyone thinks too much. When the volunteers reached out to Carrilynn for her opinion, her response was: "Tell me now, who can I authorize? Then what do I need to do? I can do this right away today."
The Mom is willing to cooperate fully with any attempt that might bring hope to her son. But is it feasible to call the police to find relatives? This matter involves the sin of abandonment. Even if Josiah's biological parents are found, are they willing to admit that they did it? Could it be that the police might have fled when they arrived at the house, and would this be of any benefit in obtaining bone marrow to cure Josiah's disease?
What else can be done? The volunteers of the rescue group quickly found Chinese hematologists and osteomyelologists who were willing to help Josiah. After some twists and turns, Carrilynn got Josiah's HLA match report, and the volunteers quickly sent this information to the Chinese doctor. Unfortunately, the Chinese HLA results are in a different format than the US reports. Chinese doctors were unable to match the data in the Chinese Marrow Bank.
There are currently about 3 million test results in the Chinese bone marrow bank, mainly in mainland China. Although they are also willing to provide services to Asian Americans in need abroad, (for Chinese descendants, they are most likely to find more matching donors here.) Unfortunately, American doctors cannot find the information in this database.
Then someone learned from a doctor in the United States that the American bone marrow bank NMDP (The National Marrow Donor Program, Be The Match test results will be stored in this information bank) has a cooperative relationship with many international bone marrow banks, but there is no mention of it. To the Chinese bone marrow bank, perhaps this is why it is not possible to directly ask them to check the matching status.
So the only way to use the resources of the Chinese bone marrow bank is for patients to go to China for testing. In this way, if the bone marrow can be matched, surgery is also required in China. Although the follow-up treatment can be returned to the United States, it requires a high degree of tacit cooperation and cooperation between Chinese doctors and American doctors. But everyone knows that in the current environment like China, coupled with Josiah's current physical condition, (his current physical condition is completely incompetent and highly susceptible to infection), the possibility of transferring to a hospital for flight is basically zero.
So all possibilities are exhausted, and everyone can only pray with all their hearts. At this time, the volunteers sent Josiah's mother Carilynn's latest request:
Dear friends, I would like to ask everyone a favor! Joshua is scheduled to have a stem cell boost on Tuesday, October 4th. I have asked you to pray many times in 2022, but I have never asked you to pray for a certain day or time. This time I'm asking everyone's prayers to flood into heaven this weekend for Joshua's well-being - our time has come! Because our friends come from almost all over the world, I know that it is difficult for everyone to pray together at the same time, but I want to get as many prayers as possible, you can choose one of the following, or all of them, these is our chosen date and time:
1. Saturday, October 1st at 5pm ET (Sunday, October 2nd at 5am GMT) -- it's Joshua's 15th birthday.
2. Tuesday, October 4th at 10AM ET (Tuesday, October 4th at 10PM PT) -- this is Joshua's time for the Stem Cell Intensive Treatment.
Please set an alarm clock!
I urge everyone to pray for these three requests:
I. Stem cell intensive treatment is successful.
II. The virus CMV that damaged his eyes disappeared quickly.
III. The problem of TMA (a side effect of bone marrow transplantation, which caused his red blood cells to collapse) was resolved as soon as possible.
I have one more request. I want Josiah to see his whole family, his medical team, his many friends from all over the world praying for him. If you have prayed for him, or plan to pray for him on the weekend, please tell me your city, province, country, and I will mark them on a map and show them to Josiah, except for the north and south poles , we will have prayers from all continents.
Please help spread the word, thanks!
Tips for people in the rescue group - you can write down the city, province, and country you are praying for here, and we will give it to this mother together.
So, from the help Josiah WeChat group, people's prayers began.
Soon, the people who prayed from China and the United States on both sides of the Pacific Ocean expanded into a team of global participation.
- Qian, Chongqing, China
- Jane, Barcelona, Spain
- Laurine and Auriane, Geneva, Switzerland
The clock is ticking. Each beep makes us realize that a life-defining surgical moment is closer.
The mother Carrilynn's words always echoed in my ears - Josiah was so kind and sensible, he always put the best of himself to those who knew and loved him. It breaks our hearts to think that he might leave us forever.
Last week, doctors diagnosed Josiah with thrombotic microangiopathy (TMA), which is uncommon in bone marrow transplant patients. He has small clots all over his body that can cause high blood pressure and multiple organ failure.
In the messages sent by the volunteers of the relief group, I read the words of Carrilynn," When I saw the changing seasons outside from the hospital window, I wished none of this had happened. We are not in this hospital, none of this is true. Actually I know that we are not an 'exception'. Yes, we went through unbearable hardships, but so did other families, even worse. We have no reason to think that we can escape the pain in our lives. Today I will try to choose what I can do in a given time. Nothing happens that God doesn't know. He transcends our predicament. As we walked this long road that seemed dark and lonely, he was always with us and hugged us. This belief drives us along the way."
I'm not a Christian, but I also join in this prayer that has transcended both sides of the Pacific. Carrilynn and Tom gave Josiah a new life with selfless love. Lord, please give this angelic child a second chance to be born again!
God, we are all praying for him, will you make a miracle happen!
A Perfect Love President
Chairman of the China-US Business Summit