Starting from my 25th weeks of pregnancy Adrianne needed to undergo intrauterine blood transfusion three times a week. At birth on 28th August 2013, she was diagnosed as having heart failure and hydrops fetalis, and at 4 months of age, she was officially diagnosed with Alpha Thalassemia Major at Sheikh Khalifa Medical Center (SKMC), Abu Dhabi - United Arab Emirates. For the first 4 years of her life, she received painful routine blood transfusion every 3 to 4 weeks, sending her into crying fits and with a lot of complications. Unfortunately, no one in my family was a perfect match. My husband and Adrianne’s older brother were both only 50% match while I’m 70-80% compatible. The UAE government was fully supportive but upon one condition: we needed to find a full match donor. Our search for 100% full match commenced but in vain. Luckily for us, a friend from our church had shared with us the information about a Filipino-Canadian family who had almost the same case as Adrianne’s: A family member who had BMT with another sibling but was a failure. Then luckily enough they had a donor from DKMS. Through Facebook, I immediately sent an e-mail to DKMS regarding Adrianne’s case. By the way, the United Arab Emirates, where we were resididing, do not have a BMT center. Furthermore, since we are expatriates, we only have a slim chance to be provided with treatment outside the UAE. After 1 week, Ms. Annegret Werzner of DKMS graciously responded to my email. She took our information details, even gave me uplifting words of hope and wisdom. When she finally called to inform us that the DKMS CEO has given approval for Adrianne’s free treatment, my husband and I were overwhelmingly ecstatic! We couldn’t thank God enough for this miracle through DKMS. Dr. Lawrence Faulkner of Cure2Children Foundation took over the whole process until a BMT schedule was provided to us. It took a while before the magnitude of this miracle finally sank into my whole being. I was crying on our Skype meeting with Dr. Lawrence especially when he reassuringly said, “Mama, please don’t cry, it’s not 100 percent guaranteed but results are promising“. Even until now whenever I remember Dr. Lawrence’s comforting words it causes a floodgate of tears to burst open. God indeed provides an anointing of ease where things fall into place. Another friend from our Church based in India and group of Filipino kindly offered to assist us during our stay in Bangalore, India. Everything was provided for Adrianne, she was 4 years old by then. Had Adrianne not received a BMT procedure, she would be forever tied to blood transfusions and to fighting its consequences. Praise and thank God, to Dr. Lawrence, Dr. Stalin and his Medical Team’s exemplary skills and expertise, our most beloved Adrianne had a successful BMT procedure on November 23, 2017 at Sankalp-People Tree Hospitals BMTU, Bangalore, India. Adrianne is a living testimony that God indeed works miracles through the skilful medical interventions from SKMC doctors headed by Dr. Naser Al Zein, Cure2Children’s Dr. Lawrence Faulkner, Sankalp India BMTU’s Dr. Stalin Ramprakash, DKMS organization and coordinators Ms. Annegret Werzner, Mr. Tobias Riethmuller and all the other great people who played a role in our Adrianne’s journey of healing. Adrianne is now a strong, healthy 7 years old, 3 years Post-BMT and a precociously smart girl, a born leader in her school and bossing us around in our home, too! 

Marichu and Adrian Bautista

     

 With the first Covid wave there was panic and fear all around us. We had a very sick patient whom unfortunately we lost on 11th April. During this period outpatient activity was reduced to a minimum with follow up of our post-transplant cases requiring hospital visits. From then onward we did not take up new transplants for two months. Just before the lock down, however, an Afghani family had shifted to Islamabad for BMT of their 5 years old son. I remember his father - a dentist by profession - visiting us every other day with hope that we will give a positive response and proceed with the BMT. His stay Pakistan was limited and he was facing financial issues.I believe this family was the driving force in gearing up for resuming our activity right in the middle of pandemic. Our local transplant authority by this time had started giving permission for transplant in special circumstances like in this case, provided patient and donor had undergone PCR testing for Covid at the time of submission of papers. By the time we had received the green light it was the end of July. Central line insertion from another hospital also required Covid PCR testing, so along with that we also did testing of donor, mother and focal BMT team directly involved with patient handling. Prior to patient’s admission we did multiple online and in person sessions with all team members emphasizing management guidelines during Covid. It was decided that anyone experiencing symptoms will inform the senior and will either get tested or isolate for few days. Covid antibody test was done for all team members as a part of an ongoing study. Nursing staff i was 100% dedicated to the patient, their personal or family commitments were minimized in order to avoid exposure. One of our senior staff was inducted for a government job in a Covid center, we had no choice but to relieve her from BMT duty. During this transplant we as doctors confined our direct interaction with patient to minimal and glass walls helped us in observing general condition of patient from outside the room. We also started wearing personal protective equipment. Although the peak of first wave of Covid infection had now gone, we were still conscious as outpatient activities were restarting. Our patient developed mild pulmonary changes around the engraftment period in addition to central venous line-induced sepsis, atypical pneumonia due to Covid infection was also considered. At that time our patient still had low platelet counts, naso-pharyngeal swab posed bleeding risk and we avoided it. After central line removal patient recovery was speedy and our first successful BMT during Covid era was done and patient was discharged 22 days after the bone marrow transplant. During this period three more patients were ready with permission from local transplant authority for 100% matched BMT. As the Covid situation had drastically improved by the end of August, we planned to admit all these patients with BMT one week apart. It looked like things were now back to normal but we were taken aback by the second wave of Covid infection, this time effecting us closely, from within our team members. Now there was no turning back as our unit was fully occupied with patients and their donors. Just a couple of days before harvest, our pediatric anesthetist was diagnosed with Covid and so our procedure was conducted by a newly hired young specialist in an operating theatre where multiple team members were diagnosed with Covid over the past few days. Last but not the least, I was also diagnosed with Covid. All our team members directly exposed to me were quarantined. This I believe was the most challenging phase as BMT activity was in full swing and half of us were sitting home. Indeed the way the whole activity was managed and handled deserves great deal of appreciation and shows how deep the commitment of all our team members is. As I write this report today we have received the first chimerism (engraftment) report of our second successful BMT during Covid times and our third patient is recovering without even having post BMT neutropenic fever, while the forth one is also stable and recovering. This pandemic has changed us one way or another, where fear, phobia, faith and commitment all mixed feelings filling our hearts simultaneously. Thinking positively and acting wisely has helped us prevail through this period cautiously yet productively. 

Dr Aliya Batool: Dr Akbar Niazi Teaching Hospital, Islamabad-Pakistan.

 Sana Sultani - sufferer of Beta Thalasemia Major. Desperate to get her an unrelated bone marrow transplant, we almost did the opposite what we set out to do. While Sana's condition is potentially fatal. She is does not have the grim prognosis we were led to believe by the money hungry hospital. We realised that Drs who tried to perform a (100,000 USD) operation, were ignoring the fact that the risks outweigh the benefits. Read more at Nilab Baburi LinkedIn profile. 

Nilab Baburi: Founder of Global Afghan Academy  |  

     

 “We must accept finite disappointment, but we must never lose infinite hope.” – Martin Luther King, Jr. On 16th January, 2019 it appeared that our world had collapsed – the world Helen and I built. The day started with yet another Emergency Room (ER) visit, the fourth since the Sickle Cell Anemia (SCD) diagnosis was made in our local hospital five weeks earlier. But this time around, we were in ER of a tertiary hospital. The doctor was feeling kamdili’s fingers that were swollen by dactylitis when the message came to my phone. The Human Lymphocyte Antigen (HLA) typing tests done on our other two children shows that they do not match Kamdili’s HLA. Our third child, Kamdili Gerard Onyeriri was diagnosed with SCD on 6th December, 2018. The news seemed so bad that the diagnosing physician could not muster courage to tell us right away. She had to send for the hospital’s chief pediatrician to break the sad news to us a day later. In Nigeria, some sicknesses are seen as death sentence. SCD is one of them. In fact, the disease is so dreaded that less than three decades ago it was attributed to evil spirits. In Igbo land of southeast Nigeria where we come from, it was called Ogbanje. The fear of having a child with SCD is only matched by the stigma attached to it. So this was the giant problem that emerged in our family. After Kamdili’s SCD diagnosis, we vowed to seek for a cure wherever it could be found on earth. But the HLA typing result of my children upended our resolve. Numerous hospitals in North America, Europe and Asia that we had been talking with and who were eager to perform the Bone Marrow Transplant (BMT) started declining when they learnt that our family did not have a 100% sibling donor for Kamdili. Haploidentical Bone Marrow Transplantation which became the only option to cure Kamdili of SCD was novel and on trial. Not many hospitals offered the treatment. So we were again thrown back to a near hopeless state. “Hope is being able to see that there is light despite all of the darkness” – Desmond Tutu In our near hopeless situation, Kamdili was still falling sick, notwithstanding. We frequented the tertiary hospital so much that the doctors and nurses in the ER were pitying us. However, I kept researching on hospitals that could offer any sliver of hope for a cure. We were mindful not to fall for bogus claims by some hospitals that are not backed with facts. Then, by chance, I happened to read an online Indian news article where a court sought opinion of an expert witness to decide if a thalassemia child in a custody battle should either get a Haplodidentical BMT or Matched Unrelated Donor BMT. I reasoned that if an Indian court would order for an expert witness’ deposition, the expert witness in question must be very good. So I did a little search on the expert witness, the Cure2Children Foundation which he chairs. Thereafter, I sent an email to him praying to at least get a reply. “Our brightest blazes of gladness are commonly kindled by unexpected sparks.” - Samuel Johnson. When I got a reply from Dr Lawrence Faulkner on the email that I had sent him enquiring if Cure2Children offered Haploidentical BMT, I felt a huge weight lifted off my shoulder. Being a spiritual person, I knew immediately that Kamdili would be cured of SCD. Dr. Lawrence showed so much empathy and thoughtfulness to our plight that we had rarely seen for months since the diagnosis. Our family felt that we now have an angel to walk with in this journey. An angel that has lifted many sick children from debilitating illness to good health. He was reassuring and offered tangible but unvarnished hope. After the initial email exchange, Dr Lawrence through the staff of Sankalp India Foundation afforded us - myself, my wife Helen and Kamdili, the opportunity of getting free HLA typing tests with DKMS Germany. We had spent thousands of dollars to have HLA typing tests done on all our three children few months earlier. But this time around we got the tests done pro bono through Dr. Lawrence’s intervention. After the HLA test results were out, our family in conjunction with Cure2Children Foundation and Sankalp India Foundation scheduled our travel to India for first week of November 2019. Within this period we were in direct communication with Dr. Lawrence who advised on the best treatment and management for Kamdili before he arrived India for the bone marrow transplant. This greatly reduced his frequent ER visits to near zero. On their part, Sankalp India Foundation assisted in getting the necessary documents for our visa. The staff of Sankalp India Foundation also assisted in securing nice home apartment in Bangalore that is 15minutes drive to the hospital. Upon our arrival in Bangalore on November 6th, 2019, the journey for kamdili’s SCD cure in India started immediately. Kamdili had the best health management up till the day of Haploidentical BMT. I and my wife, Helen who are Kamdili’s parents also underwent some tests to determine our eligibility for the bone marrow donation. Eventually, I, the father was chosen as the donor. Kamdili with Helen who is the primary caregiver entered the pediatric bone marrow transplant unit (BMT Unit) on January 22nd, 2020. The BMT was done fifteen days later on 6th February, 2020. Kamdili was discharged from the BMT Unit on +Day 28 post-transplant which was 5th March, 2020. The bone marrow transplant process was successful and he is fully cured of SCD. Within the 44 days stay inside the BMT unit, the doctors, nurses, cleaners and hospital administrators were on their toes round the clock. Every emergency is tackled like in Formular-1 Grand Prix Race fashion. Every minute matters, and every procedure is double checked for accuracy. There is no room for mistakes or tardiness. “The code of competence is the only system of morality that’s on a gold standard.” – Ayn Rand Not sooner had Kamdili and Helen gone home after discharge from the BMT Unit than the world started shutting down due to Covid-19 pandemic. It’s a very difficult time for everyone involved in bone marrow transplant globally. The world was grappling with a never seen before and highly infectious virus that had become a global pandemic. In all this chaos and shut down, doctors and nurses of Cure2Children and Sankalp India foundations were available and on call 24/7. Kamdili was attended to like in pre-pandemic era. Nothing changed except that everyone was more careful about the virus spread. Tests were done on schedule, doctors kept their appointments and treatments given on time. In numerous occasions, doctors and nurses braved the lockdown and the attendant risks to see that Kamdili never missed his medications and treatment. This is competence on superhuman scale. Life is a journey. When we stop, things don’t go right. – Pope Francis. Our experience with the BMT with Cure2Children and Sankalp India foundations has reinforced our belief that life is a journey. It has ups and downs. You meet wonderful people who can go beyond the call of duty to help in most difficult situations even in foreign lands. Bone marrow transplant is a journey too. It’s a difficult journey to boot. It has its ups and downs. And every patient’s journey is different and exclusive. It will task the primary caregivers in many ways and it requires pedantic record keeping. This Helen has judicious kept up till this day. But the journey could be fun if there are highly competent doctors and nurses like in Cure2Children and Sankalp India foundations. The gentle step by step instructions by the doctors and nurses, the camaraderie that exists among the staff can make this delicate process fun-filled. No words can fully describe the smiles on faces of the doctors, nurses and cleaners; the hope and assurance in their eyes and their swift action in times of difficulty. It’s our firm belief that we got the best treatment from the best transplant team in the world. Cure2Children Foundation has just recorded an unassailable ten thousand children registered around the world while Sankalp India Foundation is manning a caravan of life around India managing children with thalassemia and offering huge opportunity for life in hundreds of bone marrow transplantation done in India every year. From the bottom of our hearts, I on behalf of my wife Helen and our children Kamdili, Obinna and Ifedimma, say a huge thank you to Cure2Children Foundation, Sankalp India Foundation, Dr. Lawrence Faulkner, doctors, nurses, cleaners and hospital administrators involved in Kamdili Gerard Onyeriri’s cure. We love you!!! 

Tochukwu S Onyeriri

     

 When i had my eldest son he was sick so often that the doctors asked us to do hemoglobin electrophoresis. Glory be to God he was AS so a sickle carrier but, we have lost a child to sickle cell disease and are aware we are both carriers, therefore at risk of having another child with sickle cell disease. When I lost my previous child my descent into hell began. I had a depression that lasted a long time. I have difficulties getting pregnant and it was very hard to accept the only option offered by my gynecologist, she would perform amniocentesis and terminate the pregnancy if the fetus was SS. So when Manuella arrived, it was such a great joy that I refused to do the amniocentesis and believed that God would spare us. At one week of life, the diagnosis of sickle cell disease was made, a new hard blow. she is quickly put on antibiotics and folic acid but at the age of 4 months she has the first episode of severe systemic infection which happened again almost every 3 weeks including arthritis of the hip with severe anemia at the age of around 6 months. We had almost lost it. It is than that we come into contact with a mother of a patient with sickle cell disease who connected us to Dr Faulkner. We were in doubt at first, but had no other options but to throw this bottle into the sea and hope. Dr Faulkner and his team at Cure2Children did everything possible and free of charge to us, and another miracle, a ray of hope has been given to us: Our family was offered free compatibility testing by shipping mouth swabs to DKMS-Germany, and Manuella's elder brother turned out to be 100% compatible. We look forward for the Covid pandemic to be over and be able to travel, we are reassured that the Cure2Children team is professional and that this is not an illusion. We would like to thank the whole team in advance, and in particular Dr Faulkner who never spares any effort to consult remotely because we live in Cameroon, a country with very low incomes and low level of medical coverage. 

Caroline Ntyam Bikoro - Mother of Manuella