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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.

World Marrow Donor Day 2017

World Marrow Donor Day culminates in an annual celebration on September 16, 2017.  Since 2015, it has been celebrated in more than 50 countries and it continues to bring communities together.  People from all walks of life gather to share stories of brave victory, tragic defeat and ongoing courage in the face of adversity.

Hard work and determination filters through the ranks of volunteers and dedicated organizations, whose care and compassion often mean the difference between life and death for those affected by bone marrow failure.  World Marrow Donor Day aims to express overwhelming gratitude to all the donors who have registered, who have already donated and who are willing to donate in future.  Transplant recipients now have an extra-special opportunity to express their utmost thankfulness for brave and generous donors who grant them a second chance at a beautiful life.

World Marrow Donor Day hopes to spread public awareness and education about bone marrow donation.  Thanks to media platforms and targeted events around the world, awareness is key to diversifying the pool of potential donors..  Bone Marrow educational drives include information about the need for bone marrow transplants, how and where donors can register, painless bone marrow testing procedures and the process if found as a 100% match in the years that follow.

Why Bone Marrow Donation?

Only 30% of all patients who need a bone marrow transplant will find a suitable match within family circles.  Of the rest, 60% find an external match leaving 10% still searching for a suitable donor. This statistic plummets to just 20% for patients from minority groups.  This unfortunate situation coupled with the fact that a perfect bone marrow match is determined by a number of different factors (including ethnicity and genetics), emphasises the dire need for more bone marrow donors, in every country of the world.  

When the only way for a loved one to survive is through a perfect bone marrow match, it becomes clear what we are willing to fight for; what is most important.  Bone marrow testing is a quick and painless procedure.  Once on the registry, potential donors may have the chance to guarantee somebody a second chance at life.  

In 2015, Bone Marrow Data Worldwide had 25 million people registered as potential donors globally.  Today this has increased slightly to just over 30 million registered donors.  This is not nearly enough to cover the needs of the seven billion strong global population, especially when specific genetic markers are so vital to a 100% match.  Awareness and availability of information on the subject will certainly help expand the donor pool for future generations.

Who Benefits?

For patients suffering from a condition only curable through a blood marrow donation, the increased diversity of the pool of blood marrow donors becomes a lifeline.  The more potential matches there are, the greater chance they have of being saved.  The loving families of these courageous patients are the grateful recipients of extended time and quality of life when their loved one finds a 100% bone marrow match.

As donors themselves will attest, it is not only the patients or their families who benefit from the bone marrow donation process.  For many donors, the experience itself was a life-changing privilege; and has resulted in a whole new perspective.  The reality of saving a life is extravagantly beautiful; impossible to forget or to ignore, no matter your story.

How can I be involved?

On September 16, 2017, Bone Marrow Donation Drives and celebratory events will be taking place around the world.  People will volunteer time and resources to finding bone marrow matches for those who need it most, while publicly thanking all donors for their generous support.  In addition to the general public awareness created on the day itself, organizers hope to influence public figures, government policy makers, researchers and health professionals, too.

It is especially common to find blood marrow matches in donors younger than 35 years old. This is why college students are often the perfect candidates for testing.  Enthusiastic participants, such as the team at Columbia University, are planning a huge event for World Marrow Donor Day, with students and faculty educating others and commemorating all who have contributed to this worthy cause.

World Marrow Donor Day sees a spectacular global effort to spread the word about bone marrow donation.  Be it in the form of bone marrow drives, fundraising events, informational exposes or media platforms, there is room for everyone who wants to be involved.  Not only those who are able to donate bone marrow (or register as donors), but for anyone who wants to contribute talents, finances and energy, too.  Each and every effort is important and valued.

Ways to get involved with the Icla da Silva Foundation:

Host a Marrow Drive:

You can help us add more donors to the Be the Match registry by hosting a marrow drive. We will work very close to you and provide you with what it takes to have a successful marrow drive.

Volunteer at an Event:

The Icla da Silva Foundation appreciates the help and support of its volunteers who dedicate an average of 2,700 hours of volunteering per year.

Make a Donation:

Your gift helps us find a matching marrow donor for every patient that needs one.

Register as a Donor:

Help save a life by joining the Icla da Silva Foundation and the Be The Match Registry.

For more information on how to get involved in, or to register an event, please visit the World Marrow Donor Day website. To get involved directly with the Icla da Silva Foundation please review our website and discover ways to volunteer and make a difference. Share pictures on social media using #thankyoudonor and keep spreading the love!

Be The Match

If you would like more information about how to join the bone marrow registry, please visit our donor page or register with Be The Match Registry today.  You can register online, or find a bone marrow drive in your area here.  Whatever you do, don’t delay.  Someone’s entire life may depend on you taking one small step.

Seize The Day

Bone Marrow Donation should not remain only an annual focus.  There are plenty of opportunities for you make a difference.  Volunteer, donate or contribute at any time, anywhere.  We are glad to provide information, assistance and testing facilities.  In this amazing community of caring world citizens, you will find overwhelming support, lasting connections and awesome inspiration behind the hard-working service providers, as they synergise to make the world a better place.  

 

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.

 

 

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.

 

 

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!