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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.

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 includeDoctors 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:

  1. Make a financial contribution.
  2. Sign up as a donor on Be the Match Registry.
  3. Become a volunteer.

Life is short. Make the most of it.

 

WATCH: Two young women share their experience of donating marrow

 

 

Brazilian Marrow Donor Urges Others to Join

Elaine Freitas is a photographer who loves to photograph love.  Her subjects say that she is patient and calm.  Some refer to Elaine as a magician, finding smiles where they didn’t exist before.

Elaine and her husband are both Brazilian.  They had learned about a bone marrow registration in their hometown of Framingham, Massachusetts and heard the story about a 13 year old Brazilian girl who had had passed away because she could not find a matching donor.  That girl was Icla da Silva.

They both registered at the Bone Marrow drive.  Two years later, in 2004, Elaine received a call that she was a match for a patient in need.  As expected, she was frightened, but went to Dana Farber Cancer Institute to be examined and tested.

In March of 2005 she donated bone marrow.  She still does not know the patient, but she considers her experience the opportunity of a lifetime.  Imagine knowing that you were able to assist at giving someone a second chance at life.  That is an opportunity that she could not give up on.  Elaine insists she would do it all over again at a moments notice.

Elaine Freitas hopes that people recognize the wonder of life by registering and ultimately being able to donate you bone marrow to save someone else’s life.  She still remembers the story of Icla da Silva and could not imagine what she would do if a family member had leukemia without the chance to have a life again.

We honor you Elaine Freitas, you truly are a loving , patient magician.

Won’t you please consider joining the registry to give someone else a second chance at life?

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.

 

 

Celebrating 25 Years Saving Lives

How wonderful it is that nobody need wait a single moment before starting to improve the world.” – Anne Frank

Dear Friends,

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.

Your friend,

Airam da Silva
President
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.

 

Patient Story: Julian Morales

Cowabunga, dude!

Early morning traffic on the speedway is already in full swing and the Miami summer sunshine radiates on the tarmac, bouncing onto the palm trees that line the streets.  Nearby mangrove forests are teeming with life as the birds greet another spectacular sunrise on the East Coast.  Beautiful golden rays illuminate today’s gift: more time.

Michaelangelo, Leonardo, Raphael and Donatello, four pizza-loving turtle heroes, are rumored to live in the sewers around here; at least in the active imagination of this fun-loving five-year-old.  As another balmy day sets in for the small community of Homestead, Florida, Julian Morales and his amazing family make their way towards another busy day.  For chocolate ice cream-loving Julian, Florida’s summer afternoon heat should be the perfect excuse to ask Mom for a cold treat to tingle the taste buds.  Will the cheeky smile which makes his eyes sparkle do the trick?

Julian has spent most of his five years in this sunny paradise; with his Mom, Mayra, and his Dad, Dany.  He has a wonderful relationship with his doting parents and thinks of his sister, Bella, as one of his best friends in the whole wide world.  Perhaps there are no masked Teenage Mutant Ninja Turtles sporting nunchucks, katanas or a bo staff around here after all; but for little Julian Morales there are plenty of other heroes on the move around the city.

Unlike his peers, Julian’s first five years have been tough.  It has been an emotional roller coaster for his dedicated parents as a search for a diagnosis of Julian’s condition has gathered momentum.  Together with a supportive church and community, the journey has taken the family through a number of trying obstacles.

bone marrow patient

Finally, after a year of extensive visits to various health professionals, it was advised the family take a trip up to Boston.  Here the brilliant specialists at the Dana-Farber Cancer Institute in Boston, Massachusetts were able to confirm the diagnosis as a rare condition called Dyskeratosis Congenita (DKC).  This is a bone marrow failure disorder and results in low red or white blood cell counts, low platelet levels or a mixture of these three conditions.

Julian cannot attend school for the foreseeable future as his strained immune system is severely compromised.  Instead, he spends time at home with the family he loves; learning, reading and playing the way most children his age love to do.  He also adores his church community at Christ Fellowship, Miami.  Check out his awesome puppet show about Adam, Eve and the snake-snake-snake here.

A bone marrow match would enable his doctors to cure his blood condition, the first step towards dealing with the Dyskeratosis Congenita itself.  Ancestry and genetics determine the protein mixtures in the blood.  Unfortunately, since Julian is of both Mexican and Nicaraguan descent, neither of his parents presents as a perfect bone marrow match.   A consolation for Julian, however, is that his condition was diagnosed a little earlier than most, immediately kicking off the search for a suitable donor.

The Morales family teamed up with Malena Laughlin of the Icla da Silva Foundation on an urgent quest to find a bone marrow donor for Julian.  Being the largest recruitment center for the Be The Match Registry in the United States, the Icla da Silva Foundation is dedicated to helping people like Julian.  In fact, people of mixed heritage are a top priority for the foundation, since these patients only have access to a limited genetic pool of volunteer marrow donors in the bone marrow registry.

bone marrow drive

To date, there have been 96 Bone Marrow Drives to find a match for Julian, which resulted in an impressive count of 1100 potential donors.  The perfect match for Julian is yet to be found, however, and his team stands by him, persevering in hope. Until a suitable match is discovered, the family needs to regularly travel up to specialists at the Dana-Farber Cancer Institute in Boston, Massachusetts.

Despite the fact Julian’s perfect bone marrow match is still to be found, the Bone Marrow Drives miraculously provided matches for a number of other bone marrow patients along the way.  The time and effort of a dedicated family and community team, together with the Icla da Silva Foundation, is never wasted.  Would you consider registering to become a bone marrow donor for Julian and others like him?  The process is simple and the procedure is painless.

Register as a bone marrow donor with the Be The Match Registry now.

Follow Julian’s story on his Facebook page for further updates on the Morales family’s search for a match.  As Julian’s illness progresses, complications will increase.  Julian needs a donor as soon as possible.  Please help us make a difference for Julian and his family.

If is it not possible for you to become a bone marrow donor, the Morales family has set up a GoFundMe account.  Any and all contributions to the fund are welcome.  These generous donations support Julian’s numerous medical trips to Boston and his ongoing medical expenses not covered by insurance.

 

Mix & Match Patient Brunch

be the match icla da silva

“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.”

Brené Brown

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.”

Mahatma Gandhi

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.

About Victor

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.

Life-Saving Sister

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.

Transplant Day

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.

Surprise!

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.  

A Victor-y

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

ICLA Hope Week Yankees Bone Marrow Match

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!

A Victor-y

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.