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It was winter and she had a bad cold. The cold had triggered an asthma attack and her parents were wetted. They took her to the emergency room. The attending doctor ordered a chest x-ray to rule out pneumonia. Veronica did not have pneumonia…but the radiologist was concerned. Her bones appeared larger than normal for a girl of her age.
After a year of referrals to various doctors – endocrinologists, metabolic specialists, radiologists, and hematologists, after multiple rounds of bloodwork, genetic testing and numerous x-rays, it was determined that Veronica Depauli had hardened bones throughout her body. In March 2016, Veronica was diagnosed with a form of osteopetrosis (autosomal dominant osteopetrosis type 2, or ADO2). ADO2 is a rare disorder characterized by increased bone density and abnormal bone growth, which can lead to recurring fractures, vision loss, hearing loss and facial paralysis. It can also impair the function of bone marrow, because the bones are growing at a disproportionate rate, which will prevent the body from producing new blood cells and immune system cells.
Veronica Depauli is a beautiful, intelligent 7 year old girl. She likes singing and art. You wouldn’t know it by watching her draw, or play with her younger sister Annabelle, that she has a rare disease. You wouldn’t know that her optic canals continue to narrow, which may result in vision loss, or that her bone marrow space has diminished, although it still continues to function. With each passing day, the severity of her symptoms continue to increase. Her little sister helps distract Veronica whenever she is in pain. She brings her ice packs and coloring books and tries to get her to smile by singing. She does the best she can to help her big sister.
Veronica Depauli needs a bone marrow transplant. Her doctors believe it can markedly improve her osteopetrosis and offers the best chance for longer-term survival.
The challenge with every bone marrow transplant is finding a matching donor. The difficulty is finding someone who has a similar HLA type to yours. HLA is a protein, or a marker, found in most cells in your body. Your immune system uses these markers to recognize which cells belong in your body, and which do not. When two people share an ethnic background, there is a better chance that their HLAs will match up and a transplant can take place.
Unfortunately, there are currently no matches in the national database for Veronica. Currently, Hispanic and Latino patients only have a 46% chance of finding a matching donor. This is because only 11% of the current donor pool are Latino. Veronica’s mother, Elise, is of Peruvian/Ecuadorian descent. Her father, Federico, is Uruguayan. We need more people of Hispanic and Latino heritage to join the registry.
The Icla da Silva Foundation is working with the Depauli family to help find a matching donor. We are the largest recruitment center for the Be The Match registry and we focus on adding ethnic diversity to the bone marrow registry. As more people of Latino descent are added to the registry, hope is increased for each of the 16,000 patients who are in need of a bone marrow transplant every year.
You can join the registry, and add hope for Veronica, right here:
join the registry
Veronica’s parents have been very active in spreading the word and trying to get more people to join the registry. Not just for their daughter, but for all of the patients who are in need of a life saving transplant.
“It’s been very discouraging and I am desperate because God forbid my daughter does not get a match” – Elise Luciano, Veronica’s Mom
“Please help us, what would you do if it were your child, your family…please join the registry, you could save somebody’s life” – Federico Depauli, Veronica’s Dad
The steps to join the registry are simple:
If you match a patient in need of a life saving transplant, the vast majority of bone marrow donations occur through a process called PBSC, which is a non surgical procedure that is very similar to giving plasma. If you would like more information on the typical donation process, please click here.
Despite thier continued challenges, Veronica’s parents hold onto the hope that a matching donor will be found.
“One day my daughter will be pain free, one day my daughter will be able to live just like any other child” -Elise Luciano, Veronica’s Mom
We hope so too Elise.
Please join the registry for Veronica Join the registry
PATIENT UPDATE: Mission of Joy – Creating Superheroes
In early July of 2017, Aashim Joy was diagnosed with ALL (B-Cell Type Acute Lymphoblastic Leukemia). His only hope for a cure is a matching bone marrow transplant, and we first reported his story here.
Aashim is currently in remission, which is good news, at least temporarily. For leukemia patients undergoing chemotherapy, remission means that there is ‘less’ cancer in the body. Unfortunately, the chance of a relapse, or a recurrence of cancer, remains high and it is important that they maintain their treatments, and continue their search for a matching bone marrow donor.
Aashim Joy lives up to his name, literally. He is in good spirits, always positive and usually ‘joyful’. He is very focused on spreading the word about joining the registry and supporting patient services.
Recently, he attended and spoke at our 5K in NYC, he also talked about his journey at our Mix & Match event last month. If you attended either event, you heard Aashim speak about becoming a superhero. He is on a mission, he wants to create superheroes. He is devoted to educating as many people as possible about the importance of registering to become a bone marrow donor, and staying committed if you are identified as a match for someone. He wants everyone to understand how meaningful it is to save a life and thus, how easy it is to become a superhero.
Working with bone marrow patients for the last 25 years, we know he is right. We understand that reaching out to friends and posting on social media does not generate the numbers necessary to save the many lives who are in need of a matching donor. Try as we may, enough people don’t understand how simple the process of registering is. They fail to recognize that the vast majority of bone marrow donations are neither painful, nor invasive. As Aashim says – “There are a lot of misconceptions associated with bone marrow transplant, and most folks don’t really feel it’s worth the effort to wake up on a Sunday morning and register as a donor.”
Aashim, along with his beautiful and intelligent wife Reema, stand behind this mission, to raise awareness and increase support. From their apartment in NYC, Aashim and his wife have spearheaded many bone marrow drives throughout India. His friends at Deloitte put together a fundraising team and participated as ‘Run For Joy’ in the MatchMaker 5K. Aashim even donated his birthday to the Icla da Silva Foundation, helping our efforts to provide more patient support services to those in need.
Aashim donated his birthday by setting up a simple donation page. He went to www.icla.org/get-involved and clicked on “Fundraise with Us.” From this link, he easily developed an online fundraising page. Aashim wrote a short paragraph about his experience, and then posted the link to his Facebook page, inviting his friends and followers to get involved. The fundraiser lasted until his birthday, and raised 120% of the goal! Thank you to Aashim and all his friends and family for taking this extra step to ensure that more patients who need a bone marrow transplant can find a match. You are all superheroes and you are all saving lives!
It’s so easy to start a fundraiser for the Icla da Silva Foundation. Follow the same steps as Aashim, customize your fundraising page, and share with your friends and family. It doesn’t have to be your birthday to get involved. Whether you’re running a marathon, remembering a loved one, or celebrating an anniversary, any time is a good time to be a superhero and help save lives.
Everyone between the ages of 18-44 can be a superhero. Start by joining the registry in honor of Aashim https://join.bethematch.org/gettestedforjoy. If you want to make a donation to Aashim’s birthday fundraiser, you can still do so here.
Thank you to Aashim, and his wife Reema, for your continued efforts to spread awareness about blood cancers and the power of joining the Be The Match registry; saving a life can make anyone a superhero.
Mighty Mikey Sexton
Did you know that an orange ribbon promotes leukemia awareness and shows support for leukemia survivors and their family and friends? Orange also happens to be Mikey Sexton’s favorite color. It’s a strange coincidence because seven year old Mikey was just recently diagnosed with CML (chronic myeloid leukemia) and is in need of a bone marrow transplant.
CML is a rare form of blood cancer that typically affects older adults, so it is rarer still to be diagnosed with CML as a young child. It begins in the blood forming cells of the bone marrow, and eventually spreads to the blood. CML is a fairly slow growing leukemia, but it can also change into a fast-growing acute leukemia that is hard to treat.
Mikey’s father, Mike Sexton, who is a corrections officer and volunteer fireman says, “he was really tired, kind of pale, and not really acting like himself.” After his diagnosis, and a week at the hospital, Mikey spent 2 weeks at home taking oral chemotherapy drugs.
His doctors believe that a bone marrow transplant will be his only hope for a cure. Mikey’s younger brother was tested, but he is only a 50% match.
This is where the Icla da Silva Foundation steps in. Patients like Mikey, who need a transplant, rely on us to help them find a matching bone marrow donor. We have begun working with Mikey’s family to schedule marrow drives, asking people to join the Be The Match bone marrow registry. You can join the registry by by attending one of our drives, or you can join online, providing basic contact information and some medical history. Be The Match sends out a swab kit, with simple directions to capture your HLA type, and you will be entered in the registry with the hopes of matching a patient in need of a marrow transplant.
There are more than 14,000 patients with various forms of blood cancer who can be saved if they are able to find a matching donor. The online process to join the registry takes 8 minutes. If you match a patient and agree to become a donor, the gratitude and understanding that you saved a life lasts a lifetime.
You can join the registry in honor of Mikey right here, you may be his match.joIN the registry
Another way that you can help is by spreading the word about Mikey’s story. You can share this story by using the links below, and ask your friends to consider joining the registry. If you have access to a larger group of people – through an employer, a club, a school or a church organization, you can host a drive in honor of a patient. We do most of the work, you simply have to fill out the request form here and make the introduction.
You can also help the family directly by making a donation to their personal gofundme page.
Mikey was deemed healthy enough to go back to school, and he couldn’t be happier. This video from his hometown Spectrum News, shows the overwhelming support received at his elementary school.
Warm Welcome to Classmate Battling Leukemia from Spectrum News
Mikey is a sweet boy who loves being with his friends. Although he was very excited to return to school, his parents have decided it would be best for him to attend ½ days, since Mikey is physically exhausted and can’t make it through a full day.
He likes reading, playing hockey and being a tiger scout…and of course, he also loves the color orange. We have high hopes for a matching donor, and when the time is right, a successful transplant. Keep going Mikey!
Hope Was Everywhere
The human spirit is alive. People are surprisingly positive and giving, kind and generous…I witnessed it first hand last weekend. Hope was everywhere.
Saturday, April 14th was the 2nd annual Mix and Match luncheon sponsored by the Icla da Silva Foundation. Despite the inherent challenges and dire consequences of people dealing with various forms of blood cancers, the room was filled with smiles and hope.
Family members stood and talked about their involvement with Icla da Silva. They shared stories about the loss of loved ones due to leukemia and MDS, but they still maintained focus on the importance of spreading the word about bone marrow donation and doing everything they could to help others, in the name of their father, son, daughter, husband, sister, wife, cousin and friend.
Donors talked about receiving the call that they were a match and feeling blessed by the opportunity to give life to someone through a bone marrow donation. Often, the process is not much more cumbersome than giving plasma, and they described the chance to donate their bone marrow as a privilege, as something they did not think twice about, as a way to save a person’s life.
Survivors shared information about their journeys, the diagnosis, the chemotherapy, the loving support from friends and family. They talked about working with Icla da Silva and Be the Match on the search for a matching donor, and they smiled about the outcome of a successful transplant.
And then there were the patients, some just beginning their journey, others surviving for longer than expected…all hoping that a matching donor could be found.
Some matches are harder to find. Be the Match has is the largest and most diverse bone marrow registry in the world, but it is still not big enough, or diverse enough. The Icla da Silva Foundation focuses on increasing both the size and diversity of the registry. We work to recruit potential donors from all ethnic segments in the hope that more patients will be able to find the match that they need.
You can help us save more lives by completing any combination of the following three actions:
Please help us continue to keep hope alive.
Thanks!PATIENT UPDATE: JULIAN MORALES
Please read an update about our patient, Julian Morales as reported by NBC Miami here.
You could be his match, register to become a bone marrow donor for Julian at https://icla.org/join/SaveJulianPatient Story: Tancrede Bouveret
On October 18th, Tancrede Bouveret will meet his life saving bone marrow donor for the first time, at the Icla da Silva Hope Gala in NYC. Bone marrow patients are not able to meet their donors until at least one year after a successful transplant and the meetings usually bring tears of joy.
Unfortunately, Tancrède was born at the Naval Medical Center of San Diego on May 14, 2004. His father, Luc Bouveret, always dreamed of having a child, and so with the help of a surrogate in California, Tancrede entered the world.
Unfortunatley, Tancrede was born premature, at just 27 weeks. He spent two months in critical condition at the hospital until his father Luc was able to take him home to Paris. Once back at home, Luc found it necessary to quit his job so that he could care for his son and give him the attention that he needed.
Soon after, their family expanded when Luc met his partner, David. At the age of 4, the family moved to Sao Paulo, Brazil. Luc and David decided to have another child and engaged the same surrogate in California. Tancrede, now at the age of 6, gained a brother, Elzear.
The family were living a happy life in Sao Paulo until March of 2015. Tancrede was diagnosed with Myelodysplastic Syndrome (MDS), which progressed into Leukemia.
The fathers were notified that their son had less than a 10% chance of survival. The only cure is to receive a matching bone marrow transplant. Most families have the natural assumption to use a family member, but siblings only represent a 25% chance of a match and his brother Elzear was not compatible.
Luc and David began the search to find a bone marrow donor for their son. They held drives in Brazil and utilized social media to create awareness. They gained the attention of Brazilian celebrities and soccer players, and many people registered to become donors. They requested the help of friends and family in France and the Icla da Silva Foundation helped spearhead the search in the United States.
After several months, a 90% match came through. With great hope, the fathers asked to wait a little bit longer for a 100% match. Three weeks later, in July of 2015, a 100% matching donor was identified in Madison, Wisconsin. Tancrede received his transplant on July 29, 2015.
Due to complications, he spent almost 2 years in the hospital. His body needed an additional transplant of lymphocytes, which the donor agreed to, without hesitation.
Tancrede is now 13 years old and despite his illness he continues to lead a normal life. Although still in recovery, taking an abundant amount of medicines, antibiotics, monthly chemotherapy and blood treatments, he is persistent on keeping his above average attendance in school. Tancrede has a knack for learning. He speaks four languages, is socially conscious, and has his own YouTube channel.
His fathers insist that none of this would be possible with the Icla da Silva Foundation and his life-saving bone marrow donor.
American Boy Returns from Brazil to Meet His Life-Saving Bone Marrow Donor
New York (October 4, 2017) – The Icla da Silva Foundation will hold its annual Hope Gala – a fundraising benefit to support patients in need of a bone marrow transplant – on October 18, at Guastavino’s in New York City. This year’s Gala celebrates 25 years of the organization saving lives.
At the celebration, Tancrede Bouveret, a 13 year-old American boy and former leukemia patient, will meet for the very first time the bone marrow donor who saved his life. Tancrede, born in California and living in Brazil, developed Myelodysplasia Syndrome (MDS) in 2015, and was told by doctors that he would need a bone marrow transplant to survive. Without a match in their family, they made a plea to the public to help them find a matching marrow donor.
Tancrede’s two fathers were able to gain the support of the local community, and his story caught the attention of Brazilian celebrities, including renowned footballers Kaka and Neymar. The family’s prayers were answered in July 2015, when he received a marrow transplant from a young woman from Madison, Wisconsin. It was The Icla da Silva Foundation that initiated the donor search in the United States that resulted in the match. The two have waited over a year to meet for the very first time at the Icla da Silva Hope Gala.
The The Icla da Silva Foundation has been responsible for the registration of over 500,000 potentially life-saving bone marrow donors. Since inception, the Foundation has facilitated more than 600 bone marrow transplants and assisted over 2,000 patients and their families with emotional, logistical and financial support.
At the Hope Gala, the Foundation will honor Dr. Jeffrey Chell, CEO Emeritus of Be The Match, with the Legacy of Hope Award, and East River Medical Imaging, a medical diagnostic imaging center based in New York City, with the Healthcare Leadership Award for their support of the Foundation and dedication to better healthcare.
This year’s Hope Gala is co-chaired by Tânae and Claudio Braz Ferro, and Renata and Claudio Garcia. Both Mr. Ferro and Mr. Garcia are executive leaders from AB Inbev.
Wednesday, October 18, 2017
6:30PM | Cocktail Reception and Silent Auction
7:30 | Dinner and Dancing
Black Tie Optional
Click here to find more information, make a donation, and RSVP
409 East 59th Street
New York, NY 10022
About Icla da Silva
The mission of the Icla da Silva Foundation is to save lives by recruiting bone marrow donors and providing support services to children and adults with leukemia and other diseases treatable by marrow transplants. The Foundation was created in memory of a 13-year-old Brazilian girl named Icla da Silva. After two years of fighting leukemia, Icla passed away in New York City, where she came hoping to receive a necessary life-saving treatment: a bone marrow transplant. The young girl never found a matching donor. The Icla da Silva Foundation is 501(c)3 nonprofit.
Recent Patient Stories
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.
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.
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.