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.
Patient Update: Asaya Bullock
Asaya loves karate, the color blue, and his little sister Anaya. They are best friends and they get along like two peas in a pod. He is a fun-loving little boy who is surrounded by loving parents and the support of family and friends, but he needs your help.
We have been working with Asaya Bullock and his family since 2014. Asaya has been the focus of 163 bone marrow donor drives, where we have registered 2487 potential donors on his behalf, and we continue to stand by his family for emotional, logistical and financial support. Unfortunately, these efforts have not been enough to find his cure.
This beautiful little boy needs your help.
At the age of 8 months, Asaya was diagnosed with a rare autoimmune disease called I-PEX. His parents were told he would not live past the age of two. You can read more about his story here.
In July, Asaya will be 7, which means that he has been living with this rare disease for almost seven years. He is enrolled in first grade, but he misses class often due to his compromised immune system. This past winter was rough on the family; the flu lasted for 6 weeks and Asaya lost a lot of weight. He receives IgG treatments (Immunoglubulin replacement therapy) every other week, administered by his mom so they don’t have to spend so much time traveling to the doctor. The treatments hope to increase the IgG levels in his blood, which to help fight infections.
Asaya is in desperate need of a matching bone marrow donor. His father Vincent is African American, and his mother Charlene is West Indian Caribbean. Unfortunately, Asaya’s ethnicity is under represented in the bone marrow registry. Not enough potential donors have joined, so a match has not yet been identified. Could you be his match? Do you have friends or family that could be a life saving match? Please consider joining the registry here http://join.bethematch.org/TeamAsaya. Share this post with your social media network and ask your friends to join using the links below. Get involved and host a marrow drive in your community to register more potential life savers. Learn how to do that here.
Thanks for reading, registering, and sharing. We need to work together to find a match for little Asaya.
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:
TIFFANY DAVIS IS STRONG – TIFFSTRONG
Tiffany Davis is a 31 year old woman from Miami Florida. She is smart, beautiful and strong. She is battling cancer for the second time in her life and she refuses to let it beat her. Tiffany is a Warrior. At the age of 28, Tiffany found a small lump under her left arm. She had a family history with breast cancer, her grandmother died from it, but it was never really talked about. She noticed the lump during a self examination and was diagnosed in 2014. It was detected in early stage 2, and was diagnosed as an aggressive form of cancer, described as triple negative. She had chemo, a bilateral mastectomy, otherwise known as a preventive mastectomy, followed by radiation treatments. Since her cancer was ER+ (estrogen receptor positive), she was also put on hormonal therapy. Tiffany is strong and she survived her first battle, but after two years as a survivor, during a routine check-up, her labs came back with abnormal red blood cells and a low platelet count. The oncologist sent her to a hematologist for more tests. After a series of labs and a bone marrow biopsy, it was confirmed on July 31, 2017 that Tiffany had acute myeloid leukemia. This diagnosis was the result of receiving both chemo and radiation for her breast cancer. Tiffany’s best chance of survival is to receive a matching bone marrow transplant.
Tiffany remains strong. She is positive and faithful and she will not give up. She insists that the first cancer changed her. She has become more outspoken, and believes it is important to share her journey and bring more awareness to it. She believes in her strength. At 31 years of age, Tiffany is undergoing chemotherapy again. She has completed phase 1, induction chemo, which consists of 24 hour/day chemo treatment for 7 days. The process clears the bone marrow of leukemia cells, but dramatically affects the immune system and requires a 28 day stay in the hospital. Phase 2 is the consolidation process, where they try to keep you in remission, through continued chemotherapy, until a matching donor can be found.
Finding a matching donor is Tiffany’s next battle.
African Americans have a high propensity to be diagnosed with cancer. About 1 in 2 black men, and 1 in 3 black women will be diagnosed with cancer in their lifetime. Many of these cancers can be cured with a bone marrow transplant. Since African Americans have a greater genetic diversity than other populations around the world, this diversity can make finding a perfect match more difficult. This is further impacted by the fact that the African American community is simply underrepresented in the national bone marrow registry. We encourage you to join the registry and stay committed to helping save the life of a patient in need. You could be the life saving difference. Please register using the TiffStrong referral code at Be The Match.
As a warrior, Tiffany Davis refuses to give up hope. She is thankful for the support of her family and friends and she is grateful to be able to share her journey with others. She has been documenting her thoughts and findings through her Youtube channel:
You can help Tiffany and many other patients looking for a matching transplant by hosting a marrow drive of your own at your company/school/church. Every drive helps us add more donors to the registry, please click here to request more info: https://icla.org/events/host-marrow-drive/
We stand strong with Tiffany and will do everything that we can to help her survive this next battle.
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.
On October 18th, Tancrede Bouveret will meet his life saving bone marrow donor for the first time, at the Icla da Silva Hope Gala in NYC. Bone marrow patients are not able to meet their donors until at least one year after a successful transplant and the meetings usually bring tears of joy.
About Tancrede Bouveret
Unfortunately, Tancrède was born at the Naval Medical Center of San Diego on May 14, 2004. His father, Luc Bouveret, always dreamed of having a child, and so with the help of a surrogate in California, Tancrede entered the world.
Unfortunatley, Tancrede was born premature, at just 27 weeks. He spent two months in critical condition at the hospital until his father Luc was able to take him home to Paris. Once back at home, Luc found it necessary to quit his job so that he could care for his son and give him the attention that he needed.
Soon after, their family expanded when Luc met his partner, David. At the age of 4, the family moved to Sao Paulo, Brazil. Luc and David decided to have another child and engaged the same surrogate in California. Tancrede, now at the age of 6, gained a brother, Elzear.
The family were living a happy life in Sao Paulo until March of 2015. Tancrede was diagnosed with Myelodysplastic Syndrome (MDS), which progressed into Leukemia.
The fathers were notified that their son had less than a 10% chance of survival. The only cure is to receive a matching bone marrow transplant. Most families have the natural assumption to use a family member, but siblings only represent a 25% chance of a match and his brother Elzear was not compatible.
Luc and David began the search to find a bone marrow donor for their son. They held drives in Brazil and utilized social media to create awareness. They gained the attention of Brazilian celebrities and soccer players, and many people registered to become donors. They requested the help of friends and family in France and the Icla da Silva Foundation helped spearhead the search in the United States.
After several months, a 90% match came through. With great hope, the fathers asked to wait a little bit longer for a 100% match. Three weeks later, in July of 2015, a 100% matching donor was identified in Madison, Wisconsin. Tancrede received his transplant on July 29, 2015.
Due to complications, he spent almost 2 years in the hospital. His body needed an additional transplant of lymphocytes, which the donor agreed to, without hesitation.
Tancrede is now 13 years old and despite his illness he continues to lead a normal life. Although still in recovery, taking an abundant amount of medicines, antibiotics, monthly chemotherapy and blood treatments, he is persistent on keeping his above average attendance in school. Tancrede has a knack for learning. He speaks four languages, is socially conscious, and has his own YouTube channel.
His fathers insist that none of this would be possible with the Icla da Silva Foundation and his life-saving bone marrow donor.
World Marrow Donor Day 2017
World Marrow Donor Day culminates in an annual celebration on September 16, 2017. Since 2015, it has been celebrated in more than 50 countries and it continues to bring communities together. People from all walks of life gather to share stories of brave victory, tragic defeat and ongoing courage in the face of adversity.
Hard work and determination filters through the ranks of volunteers and dedicated organizations, whose care and compassion often mean the difference between life and death for those affected by bone marrow failure. World Marrow Donor Day aims to express overwhelming gratitude to all the donors who have registered, who have already donated and who are willing to donate in future. Transplant recipients now have an extra-special opportunity to express their utmost thankfulness for brave and generous donors who grant them a second chance at a beautiful life.
World Marrow Donor Day hopes to spread public awareness and education about bone marrow donation. Thanks to media platforms and targeted events around the world, awareness is key to diversifying the pool of potential donors.. Bone Marrow educational drives include information about the need for bone marrow transplants, how and where donors can register, painless bone marrow testing procedures and the process if found as a 100% match in the years that follow.
Why Bone Marrow Donation?
Only 30% of all patients who need a bone marrow transplant will find a suitable match within family circles. Of the rest, 60% find an external match leaving 10% still searching for a suitable donor. This statistic plummets to just 20% for patients from minority groups. This unfortunate situation coupled with the fact that a perfect bone marrow match is determined by a number of different factors (including ethnicity and genetics), emphasises the dire need for more bone marrow donors, in every country of the world.
When the only way for a loved one to survive is through a perfect bone marrow match, it becomes clear what we are willing to fight for; what is most important. Bone marrow testing is a quick and painless procedure. Once on the registry, potential donors may have the chance to guarantee somebody a second chance at life.
In 2015, Bone Marrow Data Worldwide had 25 million people registered as potential donors globally. Today this has increased slightly to just over 30 million registered donors. This is not nearly enough to cover the needs of the seven billion strong global population, especially when specific genetic markers are so vital to a 100% match. Awareness and availability of information on the subject will certainly help expand the donor pool for future generations.
For patients suffering from a condition only curable through a blood marrow donation, the increased diversity of the pool of blood marrow donors becomes a lifeline. The more potential matches there are, the greater chance they have of being saved. The loving families of these courageous patients are the grateful recipients of extended time and quality of life when their loved one finds a 100% bone marrow match.
As donors themselves will attest, it is not only the patients or their families who benefit from the bone marrow donation process. For many donors, the experience itself was a life-changing privilege; and has resulted in a whole new perspective. The reality of saving a life is extravagantly beautiful; impossible to forget or to ignore, no matter your story.
How can I be involved?
On September 16, 2017, Bone Marrow Donation Drives and celebratory events will be taking place around the world. People will volunteer time and resources to finding bone marrow matches for those who need it most, while publicly thanking all donors for their generous support. In addition to the general public awareness created on the day itself, organizers hope to influence public figures, government policy makers, researchers and health professionals, too.
It is especially common to find blood marrow matches in donors younger than 35 years old. This is why college students are often the perfect candidates for testing. Enthusiastic participants, such as the team at Columbia University, are planning a huge event for World Marrow Donor Day, with students and faculty educating others and commemorating all who have contributed to this worthy cause.
World Marrow Donor Day sees a spectacular global effort to spread the word about bone marrow donation. Be it in the form of bone marrow drives, fundraising events, informational exposes or media platforms, there is room for everyone who wants to be involved. Not only those who are able to donate bone marrow (or register as donors), but for anyone who wants to contribute talents, finances and energy, too. Each and every effort is important and valued.
Ways to get involved with the Icla da Silva Foundation:
Help save a life by joining the Icla da Silva Foundation and the Be The Match Registry.
For more information on how to get involved in, or to register an event, please visit the World Marrow Donor Day website. To get involved directly with the Icla da Silva Foundation please review our website and discover ways to volunteer and make a difference. Share pictures on social media using #thankyoudonor and keep spreading the love!
Be The Match
If you would like more information about how to join the bone marrow registry, please visit our donor page or register with Be The Match Registry today. You can register online, or find a bone marrow drive in your area here. Whatever you do, don’t delay. Someone’s entire life may depend on you taking one small step.
Seize The Day
Bone Marrow Donation should not remain only an annual focus. There are plenty of opportunities for you make a difference. Volunteer, donate or contribute at any time, anywhere. We are glad to provide information, assistance and testing facilities. In this amazing community of caring world citizens, you will find overwhelming support, lasting connections and awesome inspiration behind the hard-working service providers, as they synergise to make the world a better place.
Patient Story: Asaya Bullock
Asaya Bullock has past a major milestone. He celebrated his 6th birthday, despite the fact that he was diagnosed with I-PEX Syndrome at 8 months old and his parents were told that he would not live past the age of 2.
I-PEX (immune dysregulation, polyendocrinopathy, enteropathy, X-linked syndrome) is a rare genetic blood disorder that causes multiple autoimmune disorders.
This little boy has been fighting for his life for 6 years.
There is a cure, a bone marrow transplant, and it is relatively simple.
A PBSC bone marrow transplant requires a donor to take injections of filgrastimm 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 difficult part is finding a matching donor.
Most cells in your body contain HLA proteins. In order for a bone marrow transplant to be successful, the HLA proteins of a donor need to match those of a patient. A great deal of matching is determined by genetics and ethnicity. In Asaya’s case, his parents had a second child in an effort to find a match for their son. “As a mother, it is devastating to watch your child suffer and there is nothing that you can do to fix it,” say Charline Bullock, Asaya’s mother. Asaya’s parents, Charline and Vincent had a beautiful baby gir named Anaya.
Asaya received his sisters cord blood, but despite being a 7 point match out of 10, his body rejected her cells.
Asaya suffers from serious memory loss, body aches, stomach issues, and joint pain. “It basically hurts everywhere,” says his mom. Obviously, Asaya is a fighter, living twice as long as expected by his doctors.
Life is a series of ups and downs, and the same is true for the Bullock family. The birth of a beautiful baby sister, and the rejection of her cord blood. A donation from a registered donor, and another rejection from Asaya’s body. Recently, the Make a Wish Foundation sent the family to Disneyland. You can see the smiles as they met their favorite characters; definitely a well deserved “up” moment for the Bullock family.
Currently, the Bullocks have been living on the hopes of finding a match through the bethematch bone marrow registry. The Icla da Silva Foundation has organized 30 donor drives in the hopes of finding a match for Asaya. You can register to become a donor here: join.bethematch.org/ICLA
As you would expect, living with a rare disease and traveling to various specialists across the country for treatment requires financial assistance. Asaya’s father has instituted his own GoFundMe campaign and even one of the Icla da Silva volunteers, Omari Jinaki, (read his story here) has contributed to raising awareness and funds for Asaya and his family here.
Asaya and his family has been searching for a match since he was eight months old. Would you please consider joining the registry in case you are a match for Asaya or someone just like him. You can also help us continue to make a difference in patients lives by making a financial contribution to the Icla da Silva Foundation.
Please help us find a bone marrow match for Asaya.
Aksel the Great
Every now and again, there is a fairytale ending to a long and arduous tale of woe. This is one of those stories worth telling, if only for the sheer inspiration of its character line-up. The superhero is Aksel Johnsson, the Great Conqueror.
It all started with an impossible task that the mighty superhero was required to perform, against overwhelming odds, with limited resources; and,of course, enduring some dramatic flourishes along the journey. At two-and-a-half years old, Aksel Johnsson’s life had only just begun when he was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH). A genetic condition, HLH affects the immune system in which damaged cells are not being removed from the body as needed. A normal body does this naturally, but Aksel’s condition caused his immune system to become overstimulated and rendered this process ineffective. This in turn caused continuous damage to his tissues and organs, such as bone marrow, which lead to further complications in his little body.
At such a young age, the only chance Aksel had in overcoming the rare condition was to receive a successful bone marrow transplant and allow the body a fair chance at recovery. In a great show of strength, Aksel’s dedicated fighting force, his Mamma Carla-Prado, and his Pappa Fredrik, rallied together to find a bone marrow donor. From their home in Miami, Florida, the Scandanavian-South American family fought the HLH dragon, encouraging one another to keep going, to stay strong and to think big. His parents described Aksel with words like ‘viking strong’ and ‘super hero’ as their brave son dealt with the plethora of challenges that unfolded.
A conquering attitude makes a whole lot of difference, as proved by the positive contributions from each member of Team Aksel along the way. The home team worked tirelessly to find a donor for Aksel, drawing on every resource available and exploring every avenue. They created their own website, shared the journey on a Facebook page and even reached out to the local media for support. The Miami Heat feature helped spread awareness, widening the search for a bone marrow donor.
The heroes also joined hands with Malena Laughlin of the Icla da Silva Foundation, in the tedious search for a perfect match for Aksel. The foundation is the largest recruitment center for the Be the Match bone marrow registry in the United States. Unfortunately, not one of the 12 million registered donors presented as a compatible match at first.
Slowly but surely, however, the Icla da Silva Foundation was able to complete 165 marrow drives in honor of Aksel and our little superhero worked incredibly hard to contribute towards this process. Miraculously, this led to a staggering 3,929 potential new bone marrow donors being registered to the Be The Match Registry. Potential donors were signing up from the United States, Sweden, Monaco and the United Kingdom, all for Aksel. What a superb legacy was being built by a viking-strong Aksel in his fight for life!
Shortly thereafter, Aksel’s doctor insisted on a swift course of action. They could wait no longer for a perfect match to be found. At a 60% match, Fredrik, Aksel’s father, began to prepare for the bone marrow transplant. With the last-minute twist of fate every fairytale needs, a donor joined the registry and presented a 8 out of 10 match! The 44-year-old hero agreed to donate his stem cells to Aksel, sparking celebrations all round as hope held out. Aksel received the bone marrow transplant in July 2016.
The viking-strong superhero was reborn at the Cincinnati Children’s hospital as his body was given a second chance at life. A few months after the transplant, Aksel was showing reports of low engraftment – the process where new blood-forming cells start to grow and create healthy blood stem cells. Never wavering from his chosen course, Aksel donned on his best viking face and a positive attitude as he took things one day at a time.
Victorious and inspirational, Aksel won his fight. As at April 2017, his bone marrow transplant engraftment reached 100%. Even though his immune system is still recovering, his prognosis remains firmly on the right track. He will need continued treatment for another year, but Aksel and his hero team have beaten the HLH dragon.
Aksel the Great may only be a little boy, but strength and honor are boldly displayed in the way he lives. On May 1, 2017, Aksel turned five. The hero and his family still have a long road to walk, but the little viking continues to display a superhero attitude and he is getting stronger everyday – viking strong. Aksel’s future looks bright.
If you were as excited as we were to hear about Aksel’s victory over HLH, please consider joining the registry as a potential bone marrow donor. You could be the hero to someone like Aksel and save a life. The process is simple.