“How wonderful it is that nobody need wait a single moment before starting to improve the world.” – Anne Frank
This year marks the 25th Anniversary of The Icla da Silva Foundation. For 25 years we have worked tirelessly to save the lives of patients with leukemia and other diseases treatable with bone marrow transplant.
The Icla da Silva Foundation was founded in memory of my younger sister Icla. Our family moved to New York from Brazil after Icla’s diagnosis with leukemia because the doctors told us it would be impossible to find a life-saving bone marrow match in Brazil due to a lack of a registry in the country. There is only a 25% chance a sibling will be a match, however neither myself nor my brother were. Our family began to enlist our new community in New York in an effort to add more bone marrow donors to the National Marrow Donor Program’s registry (now the Be the Match registry). We went to churches, community centers, and schools, all hoping that one special person might be my sister’s cure. Sadly, Icla passed away in New York City, never having found a matching donor.
In a note found after her passing, Icla wrote: “Dear Mom, I’m fine. Don’t worry about me. I want you to help all of my friends.” Icla’s last brave wishes were to help people in need of bone marrow transplants, and thus the Icla da Silva Foundation was established.
When my sister passed away on June 21, 1991, she was only 13 years old. This year, as we celebrate 25 years in service to patients in need of a bone marrow transplant, it is hard to wrap my head around the reality that this organization, her namesake, has existed almost twice as long as she did on this Earth. It is a testament to her heart and her vision that we stand here today.
The Icla da Silva Foundation exists to support patients by recruiting bone marrow donors, raising funds and assisting with financial and emotional support. We also help patients navigate the medical system and make referrals to various treatment centers depending on the specific needs of each patient.
I am very proud that the Icla da Silva Foundation is the largest recruitment partner for the Be the Match registry, recruiting over 38,000 potential bone marrow donors every year. Recognizing the importance of genetics and ancestry in finding a compatible donor match, we organize drives with a specific mission of adding donors from diverse ethnic backgrounds.
Despite our successes, our mission isn’t done. There are 13,000 people who need a bone marrow transplant in the US every year, 75% of whom won’t find a match in their family, and the sad reality is that many thousands will pass without ever finding their match.
I wanted to take this opportunity to thank our friends, our supporters and the many volunteers who dedicate an average of 3,000 hours every year to saving lives. This year, we celebrate you for your support in ensuring that we raise the critical funds necessary for advancing our mission, allowing us to continue in our fight against blood cancers and other diseases that can only be cured by a bone marrow transplant. Without you, our life-saving work would not be possible. We are happy to commemorate Icla and remember her positive spirit that continues to inspire us to make a difference in other people’s lives.
Airam da Silva
The Icla da Silva Foundation
PS: To learn more about how you can become involved with The Icla da Silva Foundation, please visit our Get Involved page and add us on Facebook, Twitter, and Instagram.
Mix & Match Patient Brunch
“You never really understand a person until you consider things from his point of view…until you climb into his skin and walk around in it.”
Harper Lee, To Kill a Mockingbird
It’s a wonderful feeling to truly know and be known. No matter the course of our journey, we share the most basic of human needs: to be loved and accepted. This is the motivation behind the Icla da Silva Foundation’s annual Mix & Match event, which has continued in this spirit since its inception seven years ago.
In 2010, the foundation conducted several patient interviews in a bid to identify potential gaps in the Patient Support Services provided. The invaluable patient responses expressed a desire to connect with others who truly understood the unique circumstances they were facing. Meeting other people going through, or who have already come through a similar situation, is a powerful tool indeed. The patients assisted by the foundation, those waiting for bone marrow transplants, as well as marrow donors, caregivers, friends and family were ready to connect on a deeper level.
Inspired to action, Icla sought creative ideas on how to effectively connect a diverse group of people with one another. As an organization providing assistance to those awaiting bone marrow transplants, it is easy to focus on administrative requirements rather than the emotional needs presented. The foundation understood, however, that emotional health was key to the fight. Emotionally healthy patients and their families are equipped to succeed. Time and time again, Icla has witnessed how a positive attitude towards impossible circumstances makes the greatest difference to the healing and recovery process; no matter the unexpected obstacles or the final outcome.
Inspired to provide a platform for the celebration of life, the idea of Mix & Match was born. A special event held annually, it brings together patients and families whose lives have been affected by leukemia and other diseases treatable by bone marrow transplants. It is more than just an afternoon of education, sharing and support; for those who need it most, it is a breath of fresh air and a precious time of healing.
“There is no intimacy without vulnerability. Yet another powerful example of vulnerability as courage.”
On May 20, 2017 the Icla da Silva foundation hosted a Mix & Match event at the InterContinental New York Barclay Hotel, in New York City. Quite literally a mix of people from all walks of life, this amazing afternoon provided a safe place for those who have carried much. The stories shared were honest, beautiful, inspiring, heartbreaking and sometimes, raw. Everyone sat riveted by the captivating life stories of conquering adversity, pouring from the heart.
It was a wonderful time of connection as each former and current patient, their family support circles and their bone marrow donors had a chance to share their own stories. Emotions bubbled over as awe-inspiring testimonies filled the space between hearts. Some attendees were bone marrow transplant recipients now living normal lives. Others, at various stages of the journey, are still waiting to find their perfect bone marrow match through channels like the Be The Match Registry.
“You may never know what results come of your action, but if you do nothing there will be no result.”
As always, the personal connections made at Mix & Match were real and lasting. Everyone who shared their story felt validated and supported by people who truly understood. Everyone who listened was able to walk away with assured and encouraged. For those awaiting a bone marrow match, the stories provided crucial footholds on a journey of hope. For others who had already received a successful transplant and a new a lease on life itself, there was an immense outpouring of gratitude; and the challenge to assist and encourage others who are now walking the same road. Every life deserves to be celebrated.
See more photos from the event here.
Each one of us holds the power to make a difference in the world; to make the decision to save someone’s life. Make a difference today and join the Icla da Silva foundation’s Giving Circle with a monthly contribution.
PATIENT STORY: Victor Garcia
The inspirational Victor Garcia, and his adorable little sister, Nayyelyn, are two faces you are not likely to forget. Theirs is a beautiful example that where there is love, anything is possible. The dynamic duo has given us something to celebrate here at The Icla da Silva Foundation and we know you will love them just as much as we do.
Victor is the sweetest 11-year-old boy you may ever meet. He is also a shining example of how terrible adversity is able to cultivate strength and dignity, even in the young. Like any fun-loving and shy boy his age, he has an insatiable passion for Legos, cars and Pokémon. When he is not playing with any of these three collections, he is happily watching Youtube videos about them!
Hailing from La Romana in The Dominican Republic, the Garcias were connected with The Icla da Silva Foundation when they discovered the local hospitals did not have sufficient resources to perform the bone marrow transplant Victor desperately needed.
Victor’s journey with Acute Biphenotypic Leukemia (ABL), an uncommon mix of both kinds of acute leukemias, started in the spring of 2015. The doctors determined that Victor needed a bone marrow transplant in order to live. With the help of The Icla da Silva Foundation, Victor’s younger sister, Nayyelyn, was tested to see if she was a match. While a patient has the highest chance of finding a match among their siblings, that chance is only 30%, so when Nayyelyn’s results came back stating that she was a 100% match for her big brother, his mother Ana was so grateful.
Nayyelyn knew her brother was very sick so when Ana explained to her that she has the cure for her big brother inside of her body she knew what she had to do.
Nayyelyn, Victor’s little sister, is a lively seven-year-old with big dreams for the future. Her zest for life lights up the room and she absolutely loves to be the center of attention. Her current passions are Hello Kitty, Anna (from Frozen) and fashion; especially anything pink, purple or blue.
Nayyelyn is the perfect example of the wisdom and strength children often exhibit when faced with life-threatening situations. She took her role as her brother’s donor very seriously and she is extremely proud of her choice. When asked if she was scared about the procedure she replied,
“I wasn’t scared when they told me what I needed to do because I love my big brother and I knew I wanted to save his life.”
Journey to Transplant
The Icla da Silva Foundation started assisting the Garcia family in November 2015. The chain of events in Victor’s journey also initiated close communication between Victor’s doctor, his mother Ana, and the Foundation.
After months of detailed planning between doctors, social workers, consulates and the Foundation, Victor was accepted for treatment under a clinical trial at Yale New Haven Teaching Hospital in Connecticut. The Foundation started making arrangements to get Victor, Ana and Nayyelyn to Yale for his life-saving transplant. Victor finally arrived in the United States in August 2016. The Icla da Silva Foundation is grateful to the fantastic Ronald McDonald House in New Haven where he and his family have stayed during his treatment and recovery.
On September 19th Victor was admitted to the hospital and he began the week long process of preparing for the transplant.
Nayyelyn was admitted for her bone marrow donation on September 26, 2016. She went into the procedure with the same sense of pride and duty she exhibited when she found out she could be her brother’s donor.The donation went perfectly. The bag of her life saving marrow was taken to Victor a few moments later and the next leg of his journey began.
A Hard Winter
Victor was discharged about a month after his transplant. Unfortunately, November brought both the winter and another extended visit to the hospital for Victor, who was being closely monitored for signs the crucial bone marrow transplant would be rejected. This time, however, the culprit was an infection – a nasty but treatable one – which left him in recovery for another month.
The medication caused weakness, exhaustion, peeling skin and shaky hands, but it completely cleared the infection and Victor made it through. All was on track for an amazing recovery and a long life ahead for this inspirational young man. Amazingly determined, he was declared healthy and triumphantly discharged by Christmas Eve 2016.
After spending time all this time with the Garcias, Johanna, the Program Coordinator at The Icla da Silva Foundation had fallen head over heels in love with this beautiful family. Johanna’s own story of hope changed in 2010 and her idea had already started to form. She knew that Victor and Nayyelyn were special, and deserved to be recognized for the light they shone into the world.
After Christmas, Victor was on the mend, eagerly awaiting to be cleared for a sightseeing trip to NYC. Victor was due home in February but his doctors delayed the trip until he was well enough to travel. Time was short and Johanna had a plan.
On a secret mission, Johanna arranged a fantastic two-day adventure for the family with a few hidden gems around each bend. Little did they realize how fantastic the final surprise would be! Click here to read about how The New York Yankees took the two little Garcias and their support team on an amazing adventure with some pretty memorable chaperones.
The Icla da Silva Foundation has loved watching Victor’s fighting spirit on the road to recovery. His doctors continue to monitor Victor’s progress, making certain his new cancer-free blood cells are multiplying properly. He is getting stronger each day. His cell count keeps climbing and he is slowly being allowed to be a normal kid again, but none of this would have been possible without his life-saving donor and little sister Nayyelyn.
Icla did not find a match all those years ago, but in her memory, the Foundation has been able to help so many families in the United States and all over the world. Register to be more like Nayyelyn. If you would like to support the Foundation’s Patient Services, the program that saved Victor’s life, please go.
Like Nayyelyn, you are the key to a long and happy life for big brothers like Victor.
An Incredible Day at #HopeWeek with the Yankees
What a fantastic week at the Icla da Silva Foundation. We were privileged to share yet another tale of hope and pure humanity. This is the story of the first honorees for the 2017 New York Yankees Hope Week Celebration (#HopeWeek) – the inspirational story of Victor Garcia and his adorable little sister, Nayyelyn. Victor’s story is one of strength and dignity. He has valiantly made it through a difficult battle with Acute Biphenotypic Leukemia (ABL), which started back in the spring of 2015.
A Firm Foundation
The long chain of events in Victor’s journey initiated close communication between Mom, Ana, and a previous #HOPEWeek honoree, Johanna Arias, the Program Coordinator at The Icla da Silva Foundation. They eventually met in 2016 and after spending time with the Garcias, Johanna fell head over heels in love with this beautiful family. Johanna’s own story of hope showed how perseverance can change the course of your life during #HOPEWeek 2010 and she wanted to pay it forward. Johanna describes how her experience as a HOPE Week honoree made it possible for her to help inspiring families like the Garcias.
“I was awarded an internship at Lincoln Medical and Mental Health Center, which provided the administrative experience I needed to move forward in my professional career. This, in turn, was instrumental in securing the position as Program Coordinator for the Icla da Silva Foundation.”
Johanna’s position at The Icla da Silva Foundation has since enabled her to meet some amazing people and to assist wherever she can. In honor of Icla herself, the foundation aims to reach 38,000 new potential bone marrow donors annually. The Icla da Silva Foundation has a special emphasis in recruiting ethnic diverse donors because there are not enough on the bone marrow registry. You can read Icla’s full story here.
The Big Apple
Victor was due to return to the Dominican Republic in February but his doctors advised he was not yet well enough to travel. In the meantime, Johanna called up an old contact at The New York Yankees to see if she could organize a surprise tour of the Yankee stadium. With baseball practically being a religion in the Dominican Republic, she knew the Garcias were huge fans.
The tour didn’t materialize, but the media team at the New York Yankees decided to do something better instead. After a few weeks of meetings, the Icla da Silva Foundation was confirmed as one of the honorees for this year’s HOPE week celebration.
“I told Ana we were finally bringing them to the city to spend a few days sightseeing. The team at YES Network reached out to me to organize an interview for the family, but we couldn’t tell them what it was for.”
#HOPEWeek is an annual charity event hosted by the New York Yankees. It is a week to celebrate and highlight community heroes, dubbed ‘honorees’ by the Yankees. These honorees are individuals who inspire or initiate noteworthy deeds in their local community.
Under the guise of needing videos for the new website the Icla team was building, Ana unsuspectingly agreed to the interview. On May 20th, the family was brought down to New York and did the interview for YES Network. Treated to a marvelous day of sightseeing around the Big Apple, the tired, happy family were told that the following day would start with a tour of the Yankees Stadium. They expressed earlier that the stadium was ‘much bigger than they had imagined.’ They drove past it on their way down from New Haven. They even asked her if there was a game they could stay and watch. “I had to lie and told them that I didn’t think we had time for that,” she admitted.
A Day Out With The Yankees
On May 22nd, 2017 the big day finally arrived. It began with a tour of the Yankee stadium, as promised. The Icla da Silva Foundation team met up and started the ‘tour’ in the batting cage behind the dugout. That was when the real surprise was revealed, and there was no holding back! Cameras captured excitement as the family were told they were honorees for #HOPEWeek 2017; and would spend the entire day with some of the players at the stadium and at the world-famous Bronx Zoo! They would even be back for the Yankees game later that evening!
After chuckling their way through a batting practice with the Yankees, the group traveled to the Bronx Zoo. Taking a shuttle from the stadium to the Bronx Zoo, there was an electric air of anticipation as the children were hurtled into a whole other world. When they arrived they had lunch with the players at the Dancing Crane Cafe with the nearby flamingos for company.
After lunch, Jason Zillo, Director of the Media Department at the New York Yankees, presented Airam da Silva and the Foundation with a generous $10,000 donation check towards the Foundation’s patient support services. Then they were off to see the animals!
Gorillas, Monkeys and Snakes
The intimate exhibits and exotic collection of animals of the Bronx Zoo completely captivated the imaginations of Victor and Nayyelyn. The group took a spin around the fascinating place taking in sights and sounds beyond imagination.
Entertainment was continuously provided by both the hilarious reactions of each of the children and comical monkeys, slithering snakes, unusual tree kangaroos and gnarly asian crocodiles. The kids were in paradise.
“We saw the gorillas at the Congo Exhibit first. Everyone, not just the kids were excited about that. You can see Nayyelyn banging her chest alongside the gorillas in one of the news articles from that day.”
After more fun and games, we headed back to the stadium for dinner and to watch the game. We were treated to in the Legends Suite Dining Hall where the two young honorees went ballistic once they realized all the candy was free – and that there was not one, but two candy fully-stocked candy bars! Obviously, an abundance of Ring Pops and Kit-Kats were readily consumed that evening.
After dinner was another fantastic surprise, Victor and Nayyelyn were asked to throw the first pitch of the game – an honor both were more than happy to accept. After all, what is a little pitch in front of a stadium full of people when you have come through bone marrow transplants and endless months of recovery? The game was a success and the Yankees won, so the deserving honorees got to close out the day down on the field, giving ecstatic high fives all around. Just imagine the stories both will tell their grandchildren one day!
Thanks to the vision of HOPE Week, and the dedicated efforts of people like Johanna at The Icla da Silva Foundation, Victor, Nayyelyn and Ana got to be part of a larger story of hope and love. There is no doubt that #HOPEWeek 2017 was a day that Victor and his family will be talking about for a long time.
The Icla da Silva Foundation is growing an initiative to help more patients like Victor each year. If you would like to donate to support the patient services that saved Victor’s life please consider making a financial donation .
There is an especially great need for bone marrow donors from ethnic diverse communites to come forward because not everyone has a superhero like Nayyelyn to help them fight. Could you be someone’s Nayyelyn? Find out how to join the registry here. Like Nayyelyn, you are the key to a long and happy life for brave souls like Victor.