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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://join.bethematch.org/SaveJulian

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Patient 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.

About Tancrede Bouveret

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.

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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.

The Event
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

The Venue
Guastavino’s
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.
www.icla.org
Recent Patient Stories

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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:
join.bethematch.org/ICLA

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.

 

 

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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.

 

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