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.

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.

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.