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:
Volunteer Highlight: Melissa
On a cozy street in Queens, the sun is shining through the clouds. It’s a typical day in suburban New York City, as cars pass slowly down the road and neighbors walk their dogs down tight, hilly sidewalks.
At the end of the street, at the corner of 145 Place, stands a signpost. Two city workers diligently strap a second sign to the post. The sign reads “Robert C. Lohnes Way.” A young, red-headed woman watches them, smiling. Her husband stands beside her, holding her hand.
The Robert C. Lohnes Way sign has hung at 145 Place since 2015, but it was whisked away during a volatile wind storm that hit the sleepy neighborhood last March. The sign was instilled to honor the life of Robert “Bob” Lohnes after he passed away from MDS in 2014. It is an acknowledgement, not only of Bob’s battle with cancer, but of the long and adventurous life he lived.
An unmistakably tall and spritely figure, Bob’s bright eyes shone above his signature shapely moustache. Bob’s life was one of service. He left behind a legacy few could hope to achieve. As a younger man he served in the Navy during the Cuban Missile Crisis and then became a New York City Police detective. He was a fingerprint expert called upon by the FBI to support several high-profile forensic cases. He volunteered for the Whitestone Community Volunteer Ambulance Service and was a post 9/11 Rescue Recovery and Identification volunteer. For 30 years he was a Scoutmaster, affectionately called “Uncle Bob” by his Scouts. During his tenure he lead over 50 Scouts to the highest rank, known as the Eagle Scout.
It was just before a Scout trip, during a required routine physical, that he learned there was a problem with his blood count. When he returned from the trip, he underwent further tests. Finally, he learned he had Myelodysplastic Syndrome (MDS). MDS is a blood cancer which disrupts the production of blood cells.
Doctors told Bob and his family that he would need regular blood transfusions, and that to cure the cancer he would need a bone marrow transplant. Bob, characteristically, wasn’t fazed, but his daughter, Melissa, wanted to know more. She began to research the disease, their options and organizations who supported patients in Bob’s position. It was then that she learned about The Icla da Silva Foundation. A service-oriented family, Bob and his wife Magaly, along with Melissa and her husband Mike, formed a team, “Bob’s Mustaches” at the Foundation’s annual Matchmaker 5k Run/Walk, held on Roosevelt Island in New York.
Things progressed faster than expected. Bob’s brother was tested to see if he was a bone marrow match. Like 70% of all patients who need a bone marrow transplant, he wasn’t able to find a compatible match within his family. In February 2014, he began experimental treatment, but his condition only worsened and he was soon hospitalized. The doctors told him and his family that his kidneys were failing from an infection, as his immune system weakened. Just five days after being hospitalized in March 2014, he passed away.
In the face of terrible grief, those who loved Bob wanted to create a remembrance for him. One of his Eagle Scouts, Brian Connolly, petitioned the local town council to have 145 Place co-named “Robert C. Lohnes Way.” Bob had lived on the street for nearly 50 years and raised both his children there. Brian was able to collect signatures from the required 80% of the street’s residents, and at an official naming ceremony, the honorary sign was hung for the first time.
But the street isn’t just named after Bob, it is imbued with his memory. His daughter Melissa recalls, “We would wait for him to get home every day. We would see him walking down the block and we would run down the street and jump into his arms.”
For Melissa, community service is a way to remember her father’s life and honor his passion for helping others. The Lohnes family has run in every Matchmaker 5k Run/Walk since Bob’s passing, and Melissa has consistently come in 1st place as Individual Fundraiser. Bob’s Mustaches has been the Top Fundraising Team for four years in a row.
The family hosts an annual art benefit, gathering donations from the art world and their own community. The event includes a silent auction and raffle, as well as games and door prizes. Some years they host a bar event with a local establishment that donates half the proceeds from the night to the Matchmaker 5k team.
This year, in recognition of their outstanding volunteer activities (for The Icla da Silva Foundation and many other community service works alike), The Disney Company honored Melissa, Mike, and Magaly with the VoluntEAR of the Year award.
For Melissa, no award can compete with the knowledge that her father’s memory continues to bring health and happiness to others. The Robert C. Lohnes Way sign at the end of 145 Place is a symbol of their dedication to his legacy. The sign is also a symbol of the love they shared, and the many sunny afternoons Melissa spent, eager to jump into her father’s waiting arms.
Even though they are born and bred New Yorkers, please join us and the Lohnes family on September 24th in the beautiful city of Boston for the Matchmaker 5k to support patients in need of a life-saving transplant. Register Now:
Patient Story: Asaya Bullock
Asaya Bullock has past a major milestone. He celebrated his 6th birthday, despite the fact that he was diagnosed with I-PEX Syndrome at 8 months old and his parents were told that he would not live past the age of 2.
I-PEX (immune dysregulation, polyendocrinopathy, enteropathy, X-linked syndrome) is a rare genetic blood disorder that causes multiple autoimmune disorders.
This little boy has been fighting for his life for 6 years.
There is a cure, a bone marrow transplant, and it is relatively simple.
A PBSC bone marrow transplant requires a donor to take injections of filgrastimm over the course of 5 days, which increases the number of blood forming cells in your blood stream. On the day of donation, your blood is removed through a needle in one arm, passed into a machine that separates the blood forming cells that your body has produced, and then your blood is returned back into your body through the other arm.
The difficult part is finding a matching donor.
Most cells in your body contain HLA proteins. In order for a bone marrow transplant to be successful, the HLA proteins of a donor need to match those of a patient. A great deal of matching is determined by genetics and ethnicity. In Asaya’s case, his parents had a second child in an effort to find a match for their son. “As a mother, it is devastating to watch your child suffer and there is nothing that you can do to fix it,” say Charline Bullock, Asaya’s mother. Asaya’s parents, Charline and Vincent had a beautiful baby gir named Anaya.
Asaya received his sisters cord blood, but despite being a 7 point match out of 10, his body rejected her cells.
Asaya suffers from serious memory loss, body aches, stomach issues, and joint pain. “It basically hurts everywhere,” says his mom. Obviously, Asaya is a fighter, living twice as long as expected by his doctors.
Life is a series of ups and downs, and the same is true for the Bullock family. The birth of a beautiful baby sister, and the rejection of her cord blood. A donation from a registered donor, and another rejection from Asaya’s body. Recently, the Make a Wish Foundation sent the family to Disneyland. You can see the smiles as they met their favorite characters; definitely a well deserved “up” moment for the Bullock family.
Currently, the Bullocks have been living on the hopes of finding a match through the bethematch bone marrow registry. The Icla da Silva Foundation has organized 30 donor drives in the hopes of finding a match for Asaya. You can register to become a donor here:
As you would expect, living with a rare disease and traveling to various specialists across the country for treatment requires financial assistance. Asaya’s father has instituted his own GoFundMe campaign and even one of the Icla da Silva volunteers, Omari Jinaki, (read his story here) has contributed to raising awareness and funds for Asaya and his family here.
Asaya and his family has been searching for a match since he was eight months old. Would you please consider joining the registry in case you are a match for Asaya or someone just like him. You can also help us continue to make a difference in patients lives by making a financial contribution to the Icla da Silva Foundation.
Please help us find a bone marrow match for Asaya.
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.
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
This year marks the 25th Anniversary of The Icla da Silva Foundation. For 25 years we have worked tirelessly to save the lives of patients with leukemia and other diseases treatable with bone marrow transplant.
The Icla da Silva Foundation was founded in memory of my younger sister Icla. Our family moved to New York from Brazil after Icla’s diagnosis with leukemia because the doctors told us it would be impossible to find a life-saving bone marrow match in Brazil due to a lack of a registry in the country. There is only a 25% chance a sibling will be a match, however neither myself nor my brother were. Our family began to enlist our new community in New York in an effort to add more bone marrow donors to the National Marrow Donor Program’s registry (now the Be the Match registry). We went to churches, community centers, and schools, all hoping that one special person might be my sister’s cure. Sadly, Icla passed away in New York City, never having found a matching donor.
In a note found after her passing, Icla wrote: “Dear Mom, I’m fine. Don’t worry about me. I want you to help all of my friends.” Icla’s last brave wishes were to help people in need of bone marrow transplants, and thus the Icla da Silva Foundation was established.
When my sister passed away on June 21, 1991, she was only 13 years old. This year, as we celebrate 25 years in service to patients in need of a bone marrow transplant, it is hard to wrap my head around the reality that this organization, her namesake, has existed almost twice as long as she did on this Earth. It is a testament to her heart and her vision that we stand here today.
The Icla da Silva Foundation exists to support patients by recruiting bone marrow donors, raising funds and assisting with financial and emotional support. We also help patients navigate the medical system and make referrals to various treatment centers depending on the specific needs of each patient.
I am very proud that the Icla da Silva Foundation is the largest recruitment partner for the Be the Match registry, recruiting over 38,000 potential bone marrow donors every year. Recognizing the importance of genetics and ancestry in finding a compatible donor match, we organize drives with a specific mission of adding donors from diverse ethnic backgrounds.
Despite our successes, our mission isn’t done. There are 13,000 people who need a bone marrow transplant in the US every year, 75% of whom won’t find a match in their family, and the sad reality is that many thousands will pass without ever finding their match.
I wanted to take this opportunity to thank our friends, our supporters and the many volunteers who dedicate an average of 3,000 hours every year to saving lives. This year, we celebrate you for your support in ensuring that we raise the critical funds necessary for advancing our mission, allowing us to continue in our fight against blood cancers and other diseases that can only be cured by a bone marrow transplant. Without you, our life-saving work would not be possible. We are happy to commemorate Icla and remember her positive spirit that continues to inspire us to make a difference in other people’s lives.
Airam da Silva
The Icla da Silva Foundation
PS: To learn more about how you can become involved with The Icla da Silva Foundation, please visit our Get Involved page and add us on Facebook, Twitter, and Instagram.
Patient Story: Julian Morales
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.
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.
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.
Why Donate to ICLA?
Your gift helps us find a matching marrow donor for every patient that needs one. Thanks your help – we couldn’t do it without you!
Mix & Match Patient Brunch
“You never really understand a person until you consider things from his point of view…until you climb into his skin and walk around in it.”
Harper Lee, To Kill a Mockingbird
It’s a wonderful feeling to truly know and be known. No matter the course of our journey, we share the most basic of human needs: to be loved and accepted. This is the motivation behind the Icla da Silva Foundation’s annual Mix & Match event, which has continued in this spirit since its inception seven years ago.
In 2010, the foundation conducted several patient interviews in a bid to identify potential gaps in the Patient Support Services provided. The invaluable patient responses expressed a desire to connect with others who truly understood the unique circumstances they were facing. Meeting other people going through, or who have already come through a similar situation, is a powerful tool indeed. The patients assisted by the foundation, those waiting for bone marrow transplants, as well as marrow donors, caregivers, friends and family were ready to connect on a deeper level.
Inspired to action, Icla sought creative ideas on how to effectively connect a diverse group of people with one another. As an organization providing assistance to those awaiting bone marrow transplants, it is easy to focus on administrative requirements rather than the emotional needs presented. The foundation understood, however, that emotional health was key to the fight. Emotionally healthy patients and their families are equipped to succeed. Time and time again, Icla has witnessed how a positive attitude towards impossible circumstances makes the greatest difference to the healing and recovery process; no matter the unexpected obstacles or the final outcome.
Inspired to provide a platform for the celebration of life, the idea of Mix & Match was born. A special event held annually, it brings together patients and families whose lives have been affected by leukemia and other diseases treatable by bone marrow transplants. It is more than just an afternoon of education, sharing and support; for those who need it most, it is a breath of fresh air and a precious time of healing.
“There is no intimacy without vulnerability. Yet another powerful example of vulnerability as courage.”
On May 20, 2017 the Icla da Silva foundation hosted a Mix & Match event at the InterContinental New York Barclay Hotel, in New York City. Quite literally a mix of people from all walks of life, this amazing afternoon provided a safe place for those who have carried much. The stories shared were honest, beautiful, inspiring, heartbreaking and sometimes, raw. Everyone sat riveted by the captivating life stories of conquering adversity, pouring from the heart.
It was a wonderful time of connection as each former and current patient, their family support circles and their bone marrow donors had a chance to share their own stories. Emotions bubbled over as awe-inspiring testimonies filled the space between hearts. Some attendees were bone marrow transplant recipients now living normal lives. Others, at various stages of the journey, are still waiting to find their perfect bone marrow match through channels like the Be The Match Registry.
“You may never know what results come of your action, but if you do nothing there will be no result.”
As always, the personal connections made at Mix & Match were real and lasting. Everyone who shared their story felt validated and supported by people who truly understood. Everyone who listened was able to walk away with assured and encouraged. For those awaiting a bone marrow match, the stories provided crucial footholds on a journey of hope. For others who had already received a successful transplant and a new a lease on life itself, there was an immense outpouring of gratitude; and the challenge to assist and encourage others who are now walking the same road. Every life deserves to be celebrated.
See more photos from the event here.
Each one of us holds the power to make a difference in the world; to make the decision to save someone’s life. Make a difference today and join the Icla da Silva foundation’s Giving Circle with a monthly contribution.