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This is Lavinia, from Pingree Grove, IL, 48 miles outside of Chicago. This beautiful young girl is suffering from a rare, life-threatening, autoimmune disease and she needs your help.
Her cure exists. It’s inside you…one of you. We just don’t know which one. You may be the match that saves her life, you simply need to join the registry and agree to donate if you match.
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Lavinia De Oliveiria Santos has a condition called IFN-gamma receptor 1 deficiency. Her body is unable to fight off infections, some of which may be life-threatening. Her doctors have told the family that the best possible treatment is a stem cell transplant.
She currently takes six medications a day to help fight against infection. She also receives weekly injections to strengthen her immune system. Obviously, her parents are doing their best to keep the home disinfected in order to minimize the risk of any infection.
Her parents are a half match for Lavinia, but the doctors would prefer a 100% match. Her doctors are searching the Be The Match registry for an unrelated donor.
Becoming a potential donor is simple. You can register online by clicking the link. Once the registration is finished online, Be The Match will mail you a swab kit with easy-to-follow instructions on how to complete the process at home. When you return the kit in the mail, you will be included on the registry.
About 1 out of every 430 people included on the registry go on to donate to a patient. Only people identified as a genetic match for a searching patient are asked to donate blood stem cells.
“We urgently need more Latinos to join the registry so my daughter can find a match” -Gilmar Santos, Lavinia’s father
Lavinia’s search for a matching donor is more difficult because of her Brazilian ethnicity. People are more likely to match someone with the same ethnic background. Even though the Be The Match Registry is the largest and most diverse registry in the world, only 7% of the 19 million+ members identify as Latino. Unfortunately, the result is that Latino patients like Lavinia only have a 46% chance of finding a fully matched donor, compared to a 77% chance for those who are White. There simply aren’t enough people of various ethnicities included on the registry. Please add yourself, and ask your friends and family to do the same.
join for lavinia
Lavinia turned 6 in July. She loves to dance, sing and play as a princess. She enjoys vanilla ice cream and of course, she loves Brazilian food. Lavinia is crazy about animals and insists that she will be a veterinarian when she grows up. She is a girl with many dreams and we would like to see them all happen.
join.bethematch.org/LoveForLavinia6 year old Lavinia Santos loves to sing and dance and has many hopes and dreams. She also needs your help. Lavinia was diagnosed with IFN-gammaR1 deficiency when she was 2, and needs a stem cell transplant to survive. Her only hope is an unrelated donor, and we are asking everyone 18-44 years old to join the Be the Match Registry to possibly save Lavinia or another patient in need.Just click on join.bethematch.org/LoveForLavinia. You will register and fill out a fast online form and cheek swabs will be mailed. It’s that easy! Please share this post publicly and help Lavinia find her match!❤️
تم النشر بواسطة Love for Lavinia في الخميس، ٦ ديسمبر ٢٠١٨
Please join the registry and help us find her cure. If not for Lavinia, than for one of the 14,000 other patients who are desperately searching for their match.
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Patient Update: Asaya Bullock
Asaya loves karate, the color blue, and his little sister Anaya. They are best friends and they get along like two peas in a pod. He is a fun-loving little boy who is surrounded by loving parents and the support of family and friends, but he needs your help.
We have been working with Asaya Bullock and his family since 2014. Asaya has been the focus of 163 bone marrow donor drives, where we have registered 2487 potential donors on his behalf, and we continue to stand by his family for emotional, logistical and financial support. Unfortunately, these efforts have not been enough to find his cure.
This beautiful little boy needs your help.
At the age of 8 months, Asaya was diagnosed with a rare autoimmune disease called I-PEX. His parents were told he would not live past the age of two. You can read more about his story here.
In July, Asaya will be 7, which means that he has been living with this rare disease for almost seven years. He is enrolled in first grade, but he misses class often due to his compromised immune system. This past winter was rough on the family; the flu lasted for 6 weeks and Asaya lost a lot of weight. He receives IgG treatments (Immunoglubulin replacement therapy) every other week, administered by his mom so they don’t have to spend so much time traveling to the doctor. The treatments hope to increase the IgG levels in his blood, which to help fight infections.
Asaya is in desperate need of a matching bone marrow donor. His father Vincent is African American, and his mother Charlene is West Indian Caribbean. Unfortunately, Asaya’s ethnicity is under represented in the bone marrow registry. Not enough potential donors have joined, so a match has not yet been identified. Could you be his match? Do you have friends or family that could be a life saving match? Please consider joining the registry here http://join.bethematch.org/TeamAsaya. Share this post with your social media network and ask your friends to join using the links below. Get involved and host a marrow drive in your community to register more potential life savers. Learn how to do that here.
Thanks for reading, registering, and sharing. We need to work together to find a match for little Asaya.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.