Hope is everything. It is the light in the eyes of those treading dark places, as they embrace the unknown with peace and fierce determination. It is the fire in the hearts of those who are suffering, a burning zest for life propelling them on through the valleys.
For twenty five wonderful years, the Icla da Silva Foundation has found hope and love holding it together. A non-profit organization with a special passion for bone marrow donor recruitment, every day brings a new sense of urgency towards the patients and their families relying on the foundation’s patient support services. The ups and downs of this kind of work may feel overwhelming at times, but where there is hope there is usually inexplicable endurance and unimaginable reward.
Show Up To A Magical Place
On October 18th, 2017 the Icla da Silva Foundation will host its annual Hope Gala. A fundraising benefit, it supports patients in need of bone marrow transplants, together with their support teams. It is also instrumental in continuing to effectively drive bone marrow donor recruitment in partnership with the Be The Match Registry.
An annual highlight of the New York event calendar, this festive celebration promises to be a fantastic experience as always. As people gather from all walks of life at Guastavino’s in New York City, it is time once again to tip our hats to the brilliant contributions of people who care. This year’s Hope Gala will be co-chaired by Claudio and Tânae Ferro and Claudio and Renata Garcia. Both Mr. Ferro and Mr. Garcia are executive leaders from AB Inbev.
Since the 2017 Hope Gala commemorates 25 years of firm foundational support provided by the Icla da Silva Foundation to a host of communities from around the world, it seemed wholly appropriate to be holding the event at Guastavino’s, New York. Nestled at the foundation of the 59th street bridge, the classic lines lead down pathways of fantasy and magical memories. Patrons and heroes gather for a glorious celebration of life, in preparation for another year providing hope to those who need it most.
There is a unique opportunity to participate in the foundation’s silent auction – an interesting collection of items to pique the dullest imagination. All proceeds go towards funding the foundation’s valuable work in bone marrow donor recruitment and patient services. Exciting items on auction include something for everyone, from an original painting by Concalo Ivo to (2) round trip tickets to Rio de Janeiro via Cope Airlines to tickets and backstage tour to Dear Evan Hansen.
Why not make a little extra donation on the side, too? Each and every dollar adds a new spark of hope for those suffering and searching for a bone marrow transplant match. The gala promises to be the largest fundraising event for the Icla da Silva Foundation to date. Saving lives is no small matter.
“We have an aggressive goal to increase funds, especially to aid families who have been faced with mounting medical bills in a tough economy,” said Airam da Silva, President of the Foundation. “The Foundation will utilize every possible resource to help save as many lives as possible”
A Matter Of The Heart
This year the foundation will honor two key players in the world of bone marrow donation. The first, Dr. Jeffrey Chell, is the Chief Executive Officer of Be The Match Registry. Be The Match is currently the largest, most diverse bone marrow registry in the world. It provides hope to brave souls suffering from leukemia and other diseases requiring bone marrow transplantation. He will be receiving the Legacy of Hope Award for his superb contribution to saving lives.
The Icla da Silva Foundation will also honor East River Medical Imaging, a medical diagnostic imaging center in New York. East River Medical Imaging’s leadership in healthcare and their continued dedication to philanthropy serve a host of grateful benefactors. Their work emphasises how valuable a contribution it is possible to make when you care enough to step out.
It is not possible to name every person who deserves our recognition and gratitude. The foundation holds dear each and every person, no matter the form or weight of their contribution. We will continually express gratitude on behalf of the patients and their families benefitting from your contributions day after day.
Finally and with happy hearts, therefore, the foundation is proud to present the highlight of the entire evening. There will be an emotional first-time meeting between patient and donor. Tancrede Bouveret, a 13 year-old former leukemia patient currently living in Brazil, will finally be able to meet his life-saving bone marrow donor from Madison, WI. The patients and their generous donors may not be introduced until a full year after a successful transplant, so this is a momentous occasion for both of these brave souls.
In the past quarter century, the Icla da Silva Foundation has been responsible for the registration of over 500,000 potential bone marrow donors. Supporting the Be The Match Registry, it is especially important to help minorities increase the pool available for bone marrow donation. Since inception, the foundation has also facilitated more than 600 bone marrow transplants; and assisted over 2000 patients and their families with emotional, logistical and financial support.
Did you know?
There are only 30 million registered potential bone marrow donors on the Worldwide Registry.
If you wish to contribute to the foundation’s noble legacy, please consider the following ways to become involved:
- Donating financially
- Volunteering with the organization
- Registering as a potential bone marrow donor with Be The Match Registry
The patients, donors, volunteers, contributors, supporters, dedicated researchers and medical professionals involved at the foundation will gladly attest to the spirit of camaraderie which has formed within its inner circles. Commitment to granting others a second chance at life fosters a deep connection between ordinary people doing extraordinary things in the world. The foundation, too, understands the blessing of knowing this kind of love exists in the world.Sweet Caroline
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.
Want to save a life like Eduardo? Register as a bone marrow donor on the Be The Match Registry today.
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.
Volunteer Highlight: Omari Jinaki
The Icla da Silva Foundation hits the jackpot when it comes to selfless volunteers who unite behind the quest we are all passionate about: a second chance at life through a perfect bone marrow donor match. It is not every day, however, one comes across a soul which affects the world as powerfully as this one does. Movers and shakers, volunteers like Omari Jinaki, are the backbone of our organization, without whom the unending workload would quickly overwhelm.
There is something pure and special about Omari. His career in advertising perfectly suits the vibrant personality and charming sincerity he radiates when you first meet him. In 2009, Omari was offered a golden opportunity to internship at Ogilvy & Mather in New York. An incredible upside to the internship was the chance to fall under the mentorship of executive Marlon Layne, described by Omari as “vibrant, effusive, emotive, purposeful, driven, diligent, far-reaching, and culturally bold. It was inspiring to be around him and to emulate him.”
Not long afterwards, Omari had moved on to bigger and better things, fueled by the success he drew from Marlon’s robust leadership and continuous encouragement. His beloved and awe-inspiring mentor was then unexpectedly diagnosed with a blood cancer only curable through a successful bone marrow transplant. Shocked and uninformed about the implications, Omari began a search for information, determined to come to a full understanding of what his friend and mentor might be facing.
In the ensuing weeks and months it became clear something urgent needed to be done. Enquiries led Omari to the realization that Marlon, and others like him, needed dedicated assistance, a lot of prayer and a small dose of luck if a perfect donor match was going to be found on time. Left waiting for something so important seemed inhuman and cruel. Could finding a perfect match be so difficult?
It turns out that for minorities, with a limited pool of donors, and society’s preconceived misconceptions about what it takes to be a bone marrow donor, it can be. Not to be deterred, optimist Omari stepped forward and chose action over complacency. He connected with the Icla da Silva Foundation, the largest recruitment center for the Be the Match bone marrow registry in the United States. From that moment forward, he remained dedicated to raising funds, creating public awareness and recruiting potential bone marrow donors.
The Icla da Silva Foundation deeply appreciates Omari’s selfless involvement and hard work, aligned with the cause so close to our heart. Sadly, Marlon was unable to find a match on time and succumbed to the disease soon afterwards. Omari and his colleagues embarked on a bold campaign in loving memory of the great man they all admired. The aim of the movement was to spread the word about the prevalence of blood cancers, the need for a greater donor pool and the plight of those with an unknown amount of time left to live a full and wonderful life.
Amazingly, the first three years the group was able to raise almost $42,000 and sign up 160 new bone marrow donors to the Be the Match Registry. On 1 July 2014, Omari and his colleagues were part of an awareness-raising showcase on Spectrum News NY1. The inspiring piece highlighted the need for both stateside and international bone marrow donors, clarifying common misconceptions about the bone marrow testing and donation processes. A reassuring demonstration on how simple it was to test as a match drew large public attention. It cleared the path for thousands of potential new donors for bone marrow registries like Be The Match Registry.
In the time working with the Icla da Silva Foundation, Omari has seen how bone marrow transplants work. He has met patients saved through a successful match. He spends time with these families and sees the results with his own eyes. ”It is incredible to see someone come back to life; and regain their zest, energy, and spirit.”
Omari pours his time and energy into fundraising efforts such as the Matchmaker 5K Run/Walk benefitting the Icla da Silva Foundation. Omari has been running this particular race since 2011 and continues to return year after year, even after he having relocated away from New York. He was drawn to this cause because a cure exists. It only requires understanding that the larger the registry of potential donors, the greater the chance a match will be found and a patient cured. “I was one of those unaware healthy people.”
Omari’s contributions are truly invaluable and his attitude is inspiring. It seems fitting to end this tribute with his own words of encouragement:
“With your help, I hope we can bring more live-saving treatments to patients searching for a marrow match. Your donation goes directly to register a more diverse array of marrow donors on the registry, which increases the chances of each patient finding the live-saving donor they need. I remain incredibly appreciative of the long-time, ongoing supporters, who support Icla because they support me. I will never forget my first donor, Kenny Alexander, who sparked for years of life-saving treatments for people around the world. Immense thanks. Spread love.”
Do Something Different
You too can change a life today by:
- Registering to become a bone marrow donor,
- Supporting our efforts by making a financial contribution
Even the smallest amount helps us continue our efforts to grow the registry and provides financial assistance to patients in need.
Of course, you could also become a volunteer and participate in the heroic efforts displayed by Omari and so many other valued members of this worthy cause.
We thank you Omari Jinaki.
We appreciate your continued support of the Icla da Silva Foundation and recognize your unique enthusiasm for love and life.
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:
- Make a financial contribution.
- Sign up as a donor on Be the Match Registry.
- Become a volunteer.
Life is short. Make the most of it.
WATCH: Two young women share their experience of donating marrow
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.
If you are unable to register as a donor, but still wish to help, please consider supporting the Icla da Silva Foundation in other ways.
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.