Posts Tagged ‘stem cell transplant’

When Their World Came Crashing Down

August 29, 2018

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Roni and Bar’ was written on the wedding invitations. The marriage was to take place in September. That was before. Before a leukemia sabotaged their every dream.

Roni had discovered small lesions on her face. Her neck muscles cramped, glands in her neck swelled, as did the roof of her mouth, and blue marks appeared on her legs. It didn’t look good and it was not long before the diagnosis was confirmed.

“This can’t be,” cried Bar. “Not now! Not when we were about to marry. Everything was ready. The invitations. The hall. The band. ”

“Don’t give up hope,” the doctor said. “A stem cell transplant can cure her, Bar. Your bride will be as good as new. We just need a genetic match for her. Someone of Yemenite or Moroccan extraction. But we need it fast. Within a month. if not, …”

And so the search is on. Ezer Mizion, the largest Jewish bone marrow registry in the world, has close to a million registrants.  So far no one in the registry is a match but a drive was held in Israel and over 16,000 converged upon 36 stations throughout the country. Drives are being held in California and Florida and hundreds of swab test kits are being sent out by the NY office. Labs will be working overtime to complete the testing…before it’s too late.

Meet Roni. Share her pain.

“Someone will match. I’m sure of it! It has to happen!” Bar is optimistic and hoping to print new wedding invitations soon.

Each new registrant will be tested. The cost of each test is $50. Each registrant will remain on the database for decades, ready to save the life of any cancer patient in communities around the globe.

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Opportunity Knocked and They Answered

August 1, 2018

DNA 3

Mike E. was three and a half. The age of zoom-zooming his trucks across the floor. But Mike wasn’t zoom-zooming. The most frequent sound he emitted was a pitiful whimper as, once again, he was subjected to the painful and frightening hospital procedures. Mike was born with CGD, a disease that damages the immune system. His life was in danger and only a stem cell transplant could help. Finding a donor whose DNA matched Mike’s was vital. With a matching donor, he could live. Without…

Mike was one of the fortunate ones. From approximately 900,000 potential donors at Ezer Mizion’s Bone Marrow Registry, Nimrod C. was that match. Mike is 5 and a half now and zoom-zooming with the best of them. Recently he and his mother, Anastasia, met Nimrod for the first time. Busy with his trucks, Mike couldn’t understand why his mother burst into tears as Nimrod entered the room. Both adults stood there in silence as the tears of joy flowed. “Because of you…because of you…” Anastasia cried out.

In recent times, a bone marrow transplant is not used too frequently. The most common procedure is a stem cell transplant, a much simpler procedure. There is no surgery involved for the donor, no pain, no recovery period. The stem cell transplant is not much more complicated than giving blood. Sometimes, however, due to the patient’s condition, a bone marrow transplant is necessary.

Mali Chen (21) was diagnosed at age three with a serious and rare blood disease called thalassemia major, a condition that impedes blood cell production. Throughout her childhood and adolescence, Mali required regular blood transfusions in order to survive, but, as a result of the frequent transfusions, she sustained serious medical damage. “They found that I had a surplus of iron in the body, which got worse and worse until it endangered my life. Ezer Mizion was contacted in the hopes that, being the largest Jewish registry, it would have a match for me.”

A match was indeed found. Omri ben Yakir was told that a young woman was in need of a transplant to save her life but, due to her condition, a stem cell transplant would not be an option. It was necessary to perform a bone marrow transplant which would require painful surgery to extract the marrow from his spine with a certain degree of risk. As his name indicates, Omri was indeed a ‘precious’ human being. “My family was a bit nervous but there was no question in my mind that I would do it. It was a somewhat painful and took awhile to recover,” he admits.  “It was only after the meeting that I really understood the significance of what I’d done. Suddenly everything that had happened had a ‘face.’ In spite of the difficulty, I have absolutely no regrets about what I did. When I see her, I understand that it was all worth it. If they’d call me, I’d happily donate again.”

Omri and Mali had been students in schools near each other but had not known each other. When they met, Mali was rendered speechless. “What words are there in the dictionary to thank someone for saving your life?!”

 

 

 

Together? Nothing Is Impossible!

June 15, 2018

Alone it was impossible but together…together nothing is impossible.

ticketEzer Mizion’s Linked to Life, a WhatsApp group with many branches and hundreds in each branch, has proven this time and time again. One person needs. Another has an idea. A third has the means to make some headway and a fourth can complete it. Like the tickets story.

A twenty year old disabled woman underwent difficult surgery with a lengthy rehab. Life hasn’t been easy for her. She needed a pick-me-up. She dreamed of attending a major event being held in a few days. But attendance needed tickets and tickets were impossible to obtain.

Did I say impossible? Under normal circumstances, it could never happen. But when we all work together, even the impossible becomes a reality. And so Rivi, the Yerushalayim Linked to Life coordinator, put out a request:

Rivi: I know tickets are reserved for VIP’s and sold out long ago. Can anything be done or is this just a pipe dream?

Yossie: “How many tickets are needed?”

Rivi: “Two. For the girl and her father”

Chaya: “It’ll be easier to get tickets for the general rehearsal; there are two, one today and one tomorrow”

Rivi: “I already checked. No tickets left for general rehearsal.”

David: “Who’s in charge of the event that I can speak to?”

Several more postings…

What was that about impossible? Thirteen minutes after the initial post went up, Rivi posted: “Thanks everyone. We have two tickets.”

And sometimes it’s geography that makes something impossible.

AirplaneA patient in Israel urgently needs a stem cell transplant. His life is at stake and he cannot wait. A good possibility for a genetic match exists. A blood sample must be tested asap. But the donor lives in Argentina. Phones beeped and the wheels began to turn. It was not long until a small vial of blood was on a plane flying from Argentina to Israel. Now it was time for the next posting.

At 10:03 p.m., a post went live: “Urgent! We need someone who can receive a stem cell donor’s blood sample arriving from Argentina at 2:30 a.m. and deliver it from the airport to Elad. Anyone up at this hour who can do it?”

At 10:04 p.m. (!), the response came: “I’m landing at 2:40 a.m. and going to Elad.”

Exquisite timing. Incredible siyata di’Shemaya. When Yidden work to

Yair Wins the Lottery

March 28, 2018

bmr Yair MoznonSome people buy lottery tickets every week and sit by the phone waiting for Arela to call. I didn’t buy any ticket but I got the call anyway. Or so it seemed. In fact, it was even better. Better than winning the lottery. I got a call saying I was the only one in the world that can save the life of a thirteen-year-old boy with leukemia.  Can you imagine what that felt like? Saving a life. That’s the ultimate in goodness, in honor. And it was awarded to me!

 

My name is Yair Moznon. I am 21 and from the Otniel Hesder Yeshiva. After the call, the procedure was explained to me. First came deeper genetic testing. They warned me that this testing may show that I am not as good a match as they wished so I wouldn’t get my hopes up but, as it turned out, I was a great match for this boy. We weren’t allowed to meet but I felt very close to him as we both prepared for the transplant. I was given injections that stimulated the production of stem cells while he underwent a strong chemo treatment. I can’t believe that a 13-year-old kid has to go through this.

 

Then came the big day. My blood was taken from me, the stem cells removed and the blood returned to me. The procedure was repeated until there was enough stem cells for the transplant. I would have loved to hug him as my cells were going through his body, giving over my wishes and prayers into his being, but we aren’t allowed to meet for a year. Every registry has to follow those rules. And so I daven for him every day that my cells will cure him and allow him to grow up like every other boy his age.  In a year we’ll meet and I look forward to it like I’ve never looked forward to anything in my life. It’ll be like having a younger brother, a brother that I never met.

 

Ezer Mizion, with its close to a million registrants has facilitated 2700 life-saving transplants, 307 in 2017 alone. Due to its agreement with the IDF, a very high percentage of new registrants are between the ages of 18-25. Studies show1 that younger stem cell donors result in better patient survival rates. Overall survival decreases with increasing donor age, making age – after tissue type matching – the most important factor in choosing an unrelated stem cell donor. In addition, younger registrants will remain on the database for more decades than their older counterparts. See charts below.

 

What Goes Around, Comes Around

August 30, 2017

helping handssIt’s been said many times. Help others when you can. It’s a chessed. It’s the right thing to do. And, in addition, you never know when you may be on the other side of the fence. Batya is proof of this. About fifteen years ago, her daughter’s kidney issues that she had suffered with since the age of twelve reached a new low and only a kidney transplant could save her. Batya and her son were both good matches but Batya insisted that she be the one to donate. Her son has his whole life ahead of him. Should anything go wrong, she felt she could never forgive herself. Shortly after the transplant, her daughter gave birth to the first of two adorable grandchildren for Batya to cuddle and spoil. Imagine, a few days of discomfort and Batya earned grandchildren, great-grandchildren…eternity.

 

All was wonderful in her world until fifteen years later when Batya found herself on the other side of the fence. She wasn’t feeling well. A diagnosis was not long in coming. MDS: a life-threatening disease. . Her health condition deteriorated and blood transfusions were needed. The doctors asserted that her only chance to survive was a stem cell donation. Now it was she that needed another person with the same DNA to come forward to save her life. Ezer Mizion, the largest Jewish registry in the world, was contacted and Batya waited by the phone.  Would it ring? Would a donor be found?

 

She didn’t have too long to wait. Afik Zack, an intern in the Justice Department, was found, from over 850,000 on the Ezer Mizion database, to be a hundred percent match.

 

“At first, I didn’t understand what exactly I was supposed to undergo, and I was a little nervous. But then I learned that the donation is a simple procedure, and I agreed to go ahead with it,” says Zack. “After all, life is a circle.  It could be me that needed someone else to save my life. I would certainly want that person to say yes. It’s hard to describe the feeling I had when I realized that I’d done it. I’d done what other people only dream about. I had saved a life!” he added.

 

So far, 2,463 lifesaving transplants have taken place, thanks to the Ezer Mizion Registry. Some are from Israel. Others are from the US, Canada, South America, Europe, South Africa, Australia…wherever there are Jews.  “It is a great privilege for us to be partners in saving human lives,” said Dr. Bracha Zisser, director of the Registry. “The story of Batya and Afik is a moving, gripping tale of mutual responsibility, the fundamental value of Ezer Mizion.”

 

For further info: www.ezermizionusa.org      5225 New Utrecht Ave Bk NY 11219           718 853 8400