The human spirit is alive. People are surprisingly positive and giving, kind and generous…I witnessed it first hand last weekend. Hope was everywhere.
Saturday, April 14th was the 2nd annual Mix and Match luncheon sponsored by the Icla da Silva Foundation. Despite the inherent challenges and dire consequences of people dealing with various forms of blood cancers, the room was filled with smiles and hope.
Family members stood and talked about their involvement with Icla da Silva. They shared stories about the loss of loved ones due to leukemia and MDS, but they still maintained focus on the importance of spreading the word about bone marrow donation and doing everything they could to help others, in the name of their father, son, daughter, husband, sister, wife, cousin and friend.
Donors talked about receiving the call that they were a match and feeling blessed by the opportunity to give life to someone through a bone marrow donation. Often, the process is not much more cumbersome than giving plasma, and they described the chance to donate their bone marrow as a privilege, as something they did not think twice about, as a way to save a person’s life.
Survivors shared information about their journeys, the diagnosis, the chemotherapy, the loving support from friends and family. They talked about working with Icla da Silva and Be the Match on the search for a matching donor, and they smiled about the outcome of a successful transplant.
And then there were the patients, some just beginning their journey, others surviving for longer than expected…all hoping that a matching donor could be found.
Icla da Silva Mix & Match luncheon, April 14, 2018
Some matches are harder to find. Be the Match has is the largest and most diverse bone marrow registry in the world, but it is still not big enough, or diverse enough. The Icla da Silva Foundation focuses on increasing both the size and diversity of the registry. We work to recruit potential donors from all ethnic segments in the hope that more patients will be able to find the match that they need.
You can help us save more lives by completing any combination of the following three actions:
Join the registry and add hope to the many patients looking for a matching donor. Please click the link Join the Registry.
If you have the ability to connect and communicate with a group or community organization, we can work with you to schedule a Bone Marrow Drive hosted by you or your group; please enter your information using this link Host a Drive, and someone from the Icla da Silva Foundation will contact you. It only requires a small investment of time, and the promise to gather an interested crowd.
The other way to provide support is financially. Even small donations help us to recruit more donors and provide support services to patients in need. We are a 501 (c)(3) and all donations are tax deductible. You can donate using this link Donate Funds.
Please help us continue to keep hope alive.
Renata Has Faith
Renata Coimbra is full of life. She is always smiling and spreads joy wherever she goes. She is very close with her family and friends, she worries about those less fortunate, and she regularly contributes to her church and her community. She is recently married, a positive role model, and faithfully leads others in prayer.
Renata was recently diagnosed with leukemia and is in desperate need of a bone marrow donor. She has begun an aggressive treatment of chemotherapy and she knows that she has a long and difficult path ahead, but she has faith that she will find a matching donor.
In 2001, she moved from Espirito Santo in southern Brazil, to Boston, Massachusetts, where she worked as a house manager and loving nanny for 13 years. Missing the tropical climate of her childhood, Renata moved to Florida in 2014, where she met and married her love, Danilo. Together, they enjoy music and movies, regularly attend church, and spend time with Danilo’s family, who has accepted her as their own.
Late last year, Renata was suffering from shortness of breath. After multiple visits with doctors and specialists, she was unexpectedly diagnosed with a lymphoma that had formed in her chest and attacked the bone marrow. It quickly developed into leukemia. She has been told that even with chemo treatments to fight the cancer in her blood, a bone marrow transplant will be necessary to ensure her survival. After multiple treatments and two hospitalizations in the short timespan since she has been diagnosed, she has been forced to quit her job and live a remarkably different lifestyle.
Before she got sick, Renata and Danilo enjoyed dancing and going to the beach on weekends. Although she misses work and her Zumba class, she has never lost faith that she will overcome this disease.
Renata’s faith is overwhelming. Early in the search, they found three matching donors. Unfortunately, none of them were ready to make the commitment to donate. Renata insists that she has the support of God, friends and family, and a matching donor will come through.
While we certainly hope that everyone who registers is able to stay committed if they ever receive the call, it is important to recognize that the vast majority of bone marrow patients require a non-surgical process called peripheral blood stem cell donation (PBSC).
A PBSC bone marrow transplant requires a donor to take injections of filgrastim over the course of 5 days, which increases the number of blood forming cells in your blood stream. On the day of donation, your blood is removed through a needle in one arm, passed into a machine that separates the blood forming cells that your body has produced, and then your blood is returned back into your body through the other arm.
The process is relatively simple.
Please consider registering to become a potential bone marrow donor for Renata and the many other patients who are looking for a match.
We share Renata’s faith that more people will register and stay committed.
We ask you to share Renata’s faith that more people will register and stay committed. Share her story:
Unique Ties That Bind
Charles and his brother William are very unique. Like many other sibling relationships, they love each other, but they still fight. They have many similarities, but at times, they are also polar opposites. They are both avid skiers, but they live in Puerto Rico. And while one brother was suffering from HLH, the other was able to donate his blood stem cells to save his brother’s life.
William Flaherty, the younger brother, was diagnosed with HLH (hemophagocytic lymphohistiocytosis) at the age of 3. HLH is a rare and life threatening condition seen more often in children than in adults. The immune system doesn’t shut off as it should, and begins to go throughout the body attacking the patient’s organs.
The only cure for William was a replacement of his immune system through a bone marrow transplant. The challenge with every bone marrow transplant, is finding a matching donor. While most patients only have a 25% chance of finding a successful sibling match, William’s brother Charles was a perfect match. Those Flaherty boys are unique.
When asked about donating his stem cells, Charles, then 7 years old, was willing, but confused about the process. His parents, Dennis and Ann, shared all of the information with him and talked about the surgical procedure. Every surgery includes concerns, but Charles was ready to have his stem cells harvested so that they could be transplanted to his little brother. When asked about the procedure, he insists that the only discomfort he remembers was taking the bandage off. The surgery occurred on a Thursday; Charles was back in school on Monday.
When asked how they felt, and what was going through their minds during the harvest and then the transplant, both boys have the same perspective. “It’s ancient history…why do you adults keep talking about it?”
Both procedures were successful, and the brothers are happy and healthy, loving and bickering with one another.
When Charles is asked what he thinks now about donating his cells to his brother he says “it really wasn’t that much trouble and I’d do it again in a heartbeat.” When William is asked about his older brother stepping up to save his life, he replies, “it’s cool.”
This year, Charles Flaherty will be competing in the 2018 Winter Olympics in PyeongChang, South Korea. He is the “Mono-Estrellada,” the single star on the Alpine ski team for Puerto Rico; not unlike the single star on the Puerto Rican flag. This year marks the return of Puerto Rico to compete in the Winter Olympics for the first time since 2002.
Charles was introduced to skiing on a father/son trip following the success of his little brother’s transplant. The trip was intended to provide Charles with some special attention, something outside of the ordinary, with a focus on him; something unique.
Charles took to skiing like a fish to water. The family made annual trips to Colorado, and they were able to schedule time with the same ski instructor each year. After a few years, the instructor insisted there was nothing more he could teach Charles recreationally, he should learn to race.
In December, the Puerto Rico Olympic Committee gave their Winter Athletes Federation (FPAI) a 6 month approval of membership, so Charles Flaherty will compete in Alpine skiing at the 2018 Winter Olympics, representing Puerto Rico. With his family behind him, Charles was committed. He continued training, and competed in over 100 races before receiving Olympic Committee approval. We wish Charles well in the Winter Olympics and we are proud of his dedication and commitment to his brother, his family, and to his sport.
We encourage you to root for him and we ask you to consider joining the Be the Match registry and staying committed, just like Charles. If you receive that call, asking on behalf of a patient who needs a bone marrow donation, please remember Charles.
To learn more about how you can make a difference in the lives of patients in need of bone marrow transplants and other diseases such as HLH, click here.
Click the button below to Join the Registry:
It’s Sunny in Chicago
Chicago, the windy city, is known for jazz, Al Capone, deep-dish pizza, and die-hard sports fans. They have the Sears tower, they dye their river green on St Patrick’s Day and there is a warm sunshine that rises from one of it’s Northwest suburbs.
Craig Wisniewski lives in the Northwest suburbs, and that sunshine appears to be coming from his house. Craig has been married to his wife Jean for 42 years; they have a loving, tight-knit family, with 4 children and 4 grandchildren. Craig also has MDS (Myelodysplastic Syndrome), which he claims, “saved his life”.
Craig was diagnosed with MDS in February 2017. He was extremely exhausted, and had shortness of breath. His oncologist didn’t equate these symptoms to MDS and recommended a stress test. Two minutes into that test, they put an oxygen mask on Craig. His carotid artery was 90% blocked. He had to have surgery to clear his artery followed by quadruple bypass surgery. Family, friends, even doctors were surprised that he did not suffer a heart attack or a stroke.
Craig Wisniewski credits his MDS diagnosis with saving his life. In a weird twist of fate, without being diagnosed with MDS, he would not have met with his oncologist, who would not have recommended a stress test, and as a result, he would not have been operated on, twice, in order to save him from a stroke or a heart attack. He is truly grateful.
Now Craig needs a bone marrow transplant to cure his MDS. Based on his heart condition, it is imperative that he finds a 100% match. His three eligible siblings have been tested and none of them were a match. Sibling matches only occur in about 25% of bone marrow transplant cases. His doctor has indicated that finding a match will be extremely difficult due to his Hungarian, Polish and German ancestry. Ethnically diverse patients have a much harder time finding a matching donor within the bone marrow registry.
Craig is extremely aware that he may not find a matching donor, but he wants to use his experience and recent learning about bone marrow transplants to help other people. He wants to raise awareness of the importance of joining the registry and help other patients find their matches. Craig Wisniewski is on a mission. He is a ray of sunshine on a cold winter day in Chicago. Although he is facing one of the most devastating obstacles in his life, he wants to help other people.
Every year, 14,000 patients are diagnosed with cancers such as Leukemia and Lymphoma and can only be cured by a matching bone marrow donation. Be the Match is the largest registry of people willing to donate their bone marrow, and the Icla da Silva Foundation is the largest recruitment center for the Be the Match Registry. Icla da Silva specializes in working with patients who are ethnically diverse and may have a more difficult time finding a match.
You can join the registry, on Craig’s behalf, by using clicking here.
Craig Wisniewski is genuine. When he finished a round of chemo treatments in December, he was grateful just to be able to spend time with his loving family. He is warm, friendly and always joking to make people laugh and feel more comfortable. He sincerely wishes to help others find their match and dispel the myths about bone marrow donation, which prohibit people from registering to become donors and not answering the call if they are matched with a patient.
The process to become a potential donor is simple and more information is available here – 5 Steps of Bone Marrow Donation, but you need to take the first step and register.
The need for a bone marrow transplant happens for patients across all walks of life, regardless of age. More than 80% of newly diagnosed cases of MDS occur in people over the age of 60.
We are grateful for people like Craig and the sunshine that they bring to other people’s lives. Please help us find a match for Craig.
Save a life. Join Now.
Watch Craig’s story:
WHAT IS IT REALLY LIKE TO DONATE BONE MARROW
Read as a contributor to the Huffington Post goes through the process of donating his bone marrow:
You might be the perfect match for someone. Please join the registry and save a life here: https://icla.org/join
Samantha Mitchell joined the Be the Match registry at a bone marrow drive held at the University of Wisconsin in Oshkosh, WI, where she was studying microbiology. Little did she know that she that her HLA type was a 100% match for a young boy living in Brazil with leukemia, a boy desperately in need of a bone marrow donation.
Samantha received a call from Be the Match about a month after she joined the registry. Following a blood test and a check-up, she drove the 85 miles to Madison, WI to make a peripheral blood stem cell (PBSC) donation. At the time, she had no idea that her stem cells would travel another 5,300 miles to Sao Paulo Brazil to save that young boy living with leukemia.
The process for a PBSC donation is similar to giving blood. For 5 days, the donor receives injections of filgrastim, which increases the number of blood-forming stem cells in the bloodstream. Your blood is then removed through a needle in one arm and passed through a machine that will collect the blood-forming cells. The remaining blood is returned to you through a needle in the other arm.
Samantha says that although she was anxious about the procedure, she felt better knowing that she was directly helping someone.
After the young boy in Brazil received Samantha’s donated cells, his body had complications. He spent almost 2 years in the hospital and his doctors recommended an additional transplant of lymphocytes. Samantha agreed to a second donation without hesitation.
Samantha was finally able to meet the recipient of her cells, Tancrede Bouveret, and his entire family, at the Icla da Silva Foundation’s Hope Gala in New York City on October 18, 2017. You can read about Tancrede’s story here.
“While I already feel connected to them, words can’t express how excited to actually meet him and his family”
– Samantha Mitchell
Samantha’s Mitchell’s act of giving was selfless. The fact that she gave twice (a rare occurrence), makes her remarkable. We are grateful that she joined the registry and we are thankful that she had the commitment to save a life. Today Samantha continues to live her life, has graduated from university, and is now working at the same hospital where she donated bone marrow. Her story has come full circle.
You could be a life-saving match for a patient in need of a bone marrow transplant. Joining the Be the Match Registry is the first step to become a marrow donor. See our infographic below to learn about how you can sign up to becoming a bone marrow donor and the steps of the donation process.
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The screen shows a sunny day in Austin, Texas, with its classic blue skies and a light breeze rustling through emerald leaves. A bubbly, warm personality with a sassy grin is bouncing through a back garden, climbing trees, playing silly games and laughing at it all. As she waltzes through life with a carefree smile under her beautiful curls, Caroline Renee Dill exudes the unquenchable energy of the healthy child into which she has blossomed.
It was a rough start for this smiling girl and her family, but Caroline has completed her arduous journey to full health with flying colors. In 2005, at three months old, Caroline came down with a dangerous fever and was rushed to the emergency room. She was eventually diagnosed with chronic neutropenia (SCN), a rare blood disorder. It is characterised by low neutrophils (white blood cells), which are essential for the body to fight off bacterial infection. SCN usually presents with fevers, sores and inflammation in the mouth and a strong susceptibility to recurrent infections. Learn more about SCN here.
Consequently, Caroline has received a shot of neupogen, a white blood cell booster, every day of her life since she was just three months old. At five years old, doctors discovered her white blood cells were starting to deform. They recommended the family prepare for a bone marrow transplant once a suitable match could be found. Happily, Caroline was one of the lucky few for whom a perfect bone marrow match was quickly located; and the procedure went ahead in the summer of 2010.
John and Teresa Dill, Caroline’s committed and loving parents, have walked beside their brave daughter along this difficult road, too. Working around their jobs, other children and daily commitments, they have been her rock and kept her spirits high on the dark days. Her parents even tag-teamed each other to juggle work and family during Caroline’s long hospital residence in the summer of 2010.
For her time in hospital, Caroline received a fixed central line instead of an IV point. The central line housed three ports, which allowed her to absorb multiple medications concurrently. This also alleviated the need to have needles poked into her hands before every treatment. She also received her chemotherapy through this port, as well as the bone marrow transplant itself.
After a successful bone marrow transplant, Caroline required extended time in a sterile environment. She spent sixty days in quarantine during the recovery period to ensure her body had the best possible chance of accepting the transplant. It was critical to keep her away from bacterial or viral infection sources while her immune system was at its lowest levels.
Day 8 post-transplant, Caroline awoke with a high fever, elevated heart rate and trouble breathing. After several tests, they discovered aspergillosis in her lungs, a serious condition at the best of times. She stopped breathing and was treated with slow-release medication into her weakened little body. Three days and a host of prayers later the fever broke. Caroline started back on the road to recovery, much to the relief of her extensive support team. Seven years down the line, she is now leading a normal, healthy life.
Katelyn, Caroline’s sister, was one of many family members and friends alike who visited the hospital, sent messages of encouragement and lent support during Caroline’s journey. It was a common occurrence to find Caroline playing soccer in hospital hallways, posing with family and friends who came to visit at the window, displaying her amazing variety of funky wigs and smiling through the pain. She even volunteered for a video clip, tutorial-style, of how to swallow her daily pills (one time she took three in one go!)
Caroline had the privilege of meeting her bone marrow donor, Eduardo Dombrowski, at an Icla da Silva Foundation event a few years ago. Eduardo is a Brazilian from Florida, now living in San Francisco, and one of the generous donors listed on the Bone Marrow Registry. He took the small step of registering, went through the painless testing process and didn’t hesitate when finally called upon to save a life – Caroline’s life. These are the kind of people the Icla da Silva Foundation love to have as part of the team as we work together to recruit donors for the Be The Match Registry.
Three years later, Caroline’s reflection on the journey to health reveals how much she appreciated the support of all the special people in her life. Her time away from the machine, not being hooked up to leads during ‘free time,’ remains one of her fondest memories from the lengthy hospital stay. Caroline’s generosity of spirit is clearly evident in her idea to provide someone else who is ill with her brand new iPad, “maybe I should donate my iPad to children so they can play on it for Christmas.”
Now she wants to share her story of victory with the world, in hope it will inspire and encourage others who are facing seemingly insurmountable challenges. Clearly, Caroline is a little girl who is adored by many hearts already. She continues to inspire us with her zest for life despite the hardships of illness. We salute you, Caroline!
Watch Caroline’s Story:
We Remember the Tate Family
Last month was National Sickle Cell Awareness Month. In recognition, we remember the courageous Tate family from Maple grove Minnesota.
The first two daughters of Yalonda and Gary Tate both had sickle cell anemia. The life threatening disease meant bi-weekly trips to the hospital for blood transfusions and follow up visits for both girls. People with sickle cell disease have abnormal hemoglobin in their red blood cells. Hemoglobin is a protein that carries oxygen throughout the body. When the cells are irregularly shaped, like sickles or crescent moons, the cells can get stuck and are not able to carry adequate oxygen throughout the body. Sickle cell disease is most common among people of African descent. The only cure is a matching bone marrow transplant.
Madison, the oldest daughter (now 23), had a bone marrow transplant in 2004, which failed. The doctors told the Tates that a sibling bone marrow match was their best hope. Since their daughter Olivia was also sick, she was not an option for a transplant.
The Tates decided to have another baby. They went through in vitro fertilization, testing Yolanda’s eggs until they found one free of the sickle cell trait. In November of 2005, the Tates gave birth to their 3rd daughter, Quinnlyn. At the age of six months, Quinnlyn gave her oldest sister Madison a gift of life. Stored stem cells from her umbilical cord were used in a transplant, giving life to her older sister.
Olivia (now 19) was also in need of a matching bone marrow transplant. Fortunately, a 100% match was found. The donor, Sidnei Barbosa, had registered to become a donor through the Icla da Silva Foundation. The foundation is the largest recruitment center for the Be The Match registry, focusing almost exclusively on patients with a racially diverse background.
Joining the registry, especially for people from minority communities, is important. Olivia Tate was extremely fortunate to find a match to her blood type, but there just aren’t enough potential donors of African decent on the registry. The African American community is underrepresented, which makes it more difficult to find a matching donor. You can register here and help save a life.
Four years ago, Olivia met her donor for the first time at the Icla da Silva Foundations Hope Gala in New York City. You can view the heart-warming story here:
The Icla da Silva Foundation is holding their 25th Anniversary Hope Gala on October 18, 2017. At the Gala, there will be another special meeting between a patient and her donor. You can donate here to help us continue our mission of saving lives by recruiting bone marrow donors and supporting patients and their families with diseases treatable by marrow transplants.
Donor Story of Heart and Marrow
The Icla da Silva Foundation has the unique privilege of meeting extraordinary people on a regular basis. From inspiring patients and the families who support them, precious volunteers who keep the wheels turning, financial contributors with hearts of gold to donor angels who pledge a part of themselves to save the lives of others. Kala Maxym is one of the donors whose invaluable contributions – including her personal bone marrow donation – has changed, not only her life, but the lives of countless others, too.
The Kala We Adore
Donning a gorgeous smile as enchanting as her captivating voice, Kala is one of those people who illuminates the world with hope and beauty. Armed with courage and determination, Kala’s life has been dedicated to making the world a little better in whatever way she can and the Icla da Silva Foundation is proud to have her as part of the family.
Before her involvement with the Icla da Silva Foundation, Kala’s vibrant way of life took her on several adventurous pursuits and multiple career avenues. Woven into her tapestry there are mysterious mentions of volcanoes, gems, fine wines, presidential performances, exotic linguistics, grant writing, customer success management and even a stint at the Criminal Division of the United States Department of Justice. Boring is certainly not a part of her extensive English, Spanish or German vocabulary.
Her entrepreneurial spirit is one example of the diversity of her skills. Five Senses Tastings started as a dream to bring people a holistic experience of music, wine and other irresistible stimuli. It engages all of the senses and, in Kala’s own words, “transforms the way we think about, experience, and sense the stories of our lives.” This is part of her legacy now; giving the world something better than ordinary. A beautiful way to do all of life, don’t you think?
Of Heart and Marrow
A diversely talented woman, Kala is no stranger to using her gifts for the upliftment of others. Along with the awesome work she does for us at the Icla da Silva Foundation, she has also organized and performed recitals for numerous other organizations. Some of the those which have benefitted thus far include “Doctors Without Borders, Colegio Insular Robinson Crusoe (Chilean Earthquake Relief), Pamoja Tunaweza (Together We Can) and the ACLU of Southern California, among others.”
Not long after meeting her, it becomes clear one of the causes Kala is most eager to share is that of bone marrow donation. Her tireless efforts to increase public awareness are part of the reason the Icla da Silva Foundation are extremely grateful to have her on our team. From creative fundraising efforts to her invaluable role on the Board of Trustees, Kala not only brings unlimited energy to an exhausting mountain of tasks and checklists, but has also had first hand experience of the joy that comes from saving a life.
Spending her childhood in Germany and then living in the United Kingdom, Kala was only a graduate student in Boston when the story began. A regular blood donor, she was shocked to learn of an unfortunate setback. Due to her time living outside of the United States, the regulation change now banned her from donating blood locally – for life.
Dismayed at the turn of events, Kala was asked if she would consider registering as a potential bone marrow donor instead, as the same travel restrictions did not apply. Luckily, she said yes. A short and painless testing process ensued and she was officially placed on the Be The Match Registry as a potential bone marrow donor.
A short two years later Kala received the telephone call that would change her life. She was a perfect bone marrow match for another female; the time had come. Without hesitation, Kala remained true to her nature and said yes once again.
After some further testing at the Dana Farber Cancer Institute, there was no time to lose and the bone marrow donation process began. Lasting about a week from start to finish, the donation process is fixed forever in Kala’s mind “with wonder, awe and, perhaps strangely, with extreme fondness and love.” You can read more about her experience at Everyday Health.
After a quick recovery, free of side effects, Kala’s life resumed its frenetic pace and time marched on. However, a little over a year later, Kala received a simple message from the woman herself. The message emphasised how Kala’s small act of mercy had been the greatest gift she could have possibly given to another human being: a second chance at life.
“Hello Kala. My name is Peggy, and you saved my life.”
Kala describes her joy and gratitude at being a part of this entire process. Truly grounded, she refuses to accept the title of heroine, insisting her actions were simply those of one woman supporting another; as it should be. An honor and a privilege, indeed, but a simple of act of humanity made possible by the miracles of modern medicine.
How you can be involved
Kala and Peggy have walked a wonderful road together since the bone marrow transplant more than a decade ago. Are you ready to make a difference?If you like to join the cause, there are several ways in which you can contribute: