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Searching for a Bone Marrow Donor – Guided by Angels

Life is a series of ups and downs.  For some, it’s not an even balance, but we keep the faith and find a way to move forward.  This is the story of Naileen Colon. Naileen faces many struggles, but she has faith in the guidance of her angels.

Diagnoses

Naileen grew up in Ponce, on the southern coast of Puerto Rico. At the age of nine, she was diagnosed with megaloblastic anemia, a condition in which the bone marrow fails to produce mature red blood cells.  She maintained a healthy lifestyle to treat it. She lived a pretty normal, happy life for the next 15 years. She got married, had a baby and kept moving forward.

Unfortunately, in 2013, Naileen began to feel very weak. She was always tired and she was struggling with depression.  After visiting her doctor, she was diagnosed with Chronic Lymphocytic Leukemia (CLL), a cancer of the blood and bone marrow.

Relapse

Unfortunately, it was barely more than a year when she had her first relapse.  This began a downward spiral for Naileen.

She had to resign from her job, her husband left, and she moved back into her mother’s house with her son.  Moving back home was a very difficult transition. Her son Onix is autistic, and requires a lot of attention.  In addition, her mom was ill and constantly in and out of the hospital. Naileen struggled to find a balance between taking care of her son, her mother, and herself.  She held onto her faith and remained confident that God would not leave her side. She was being guided by angels.

Her First Angel

In 2015, it was determined that her blood transfusions were not working as planned.  Her cells were not reproducing. Naileen was advised that she would need a bone marrow transplant.  

At this time, Naileen talks about meeting an ‘angel’, Elba Lebron.  Elba is a community engagement representative from the Icla da Silva Foundation.  Elba organizes donor drives and works closely with patients throughout Puerto Rico who are in search of a life saving bone marrow donation.  Elba provided the support that Naileen needed to continue moving forward. With Elba’s help, they hosted numerous marrow drives in Puerto Rico.  Naileen felt better about her diagnosis. She realized that she wasn’t alone. In raising awareness during the donor drives, she gained more hope.  She focused on helping others. Even if she could not find a match for herself, she may be able to help others to find a match. That feeling gave her satisfaction. Her friendship with Elba was a major turning point in Naileen’s journey.

Her Second Angel

Naileen began a pill form of chemotherapy and was slowly restoring her health. She established a friendship with a man named Jerardo, who became her second angel.  As time passed, they began dating and a romance quickly blossomed. “It felt like a blessing, I didn’t think anyone would want to deal with something like this.  He is always there for me, helping me, and he is a great father to my son. My mom was happy to see things turn for me. We moved to Kissimmee, Florida in August 2016.  We wanted a better quality of life, and access to more advanced treatment for myself and my son Onix.

Moving Forward

Naileen enjoys watching movies at home with Onix and Jerardo. She loves the beach, but because of her diagnosis and the risk of infection, she can’t visit as often as she would like. She loves being a mom, taking care of Onix and watching him progress in his everyday interactions with people.  Watching him play makes her happy. Naileen has managed her challenges and is happy with her accomplishments so far, especially with her son, but she wants to do so much more. She understands that the ups and downs will continue, and although there are times when she questions what will happen next, Naileen knows that God’s plan is far more than what she can imagine.  She puts all of her trust in him, and the guidance of her angels.

The Next Challenge

Naileen is in desperate need of a bone marrow transplant.  The doctors have been searching the national registry for a matching donor for 3 years.  Finding a matching bone marrow donor is not an easy feat, especially for patients with Hispanic or Latino heritage.  There is currently no match for Naileen on the Be The Match bone marrow registry.  The registry is the largest and most diverse in the world, but patients of Hispanic origin only have a 46% chance of finding a potential match.

The solution to this challenge is to get more people, especially those with diverse ethnic origins, to join the bone marrow registry.  You can join online in less than 10 minutes, and agree to become a potential donor for patients like Naileen.

Please join the registry, for Naileen or the 14,000 other patients who are searching for their match.

JOIN THE REGISTRY

You can also help by sharing Naileen’s story.  As we increase awareness of the need for more potential donors, especially for people with diverse ethnicities, we hope that more people will understand the importance in joining the registry. The donation process is not difficult and there is no reason to be afraid.  You can read more about it here: donation process

Thank you for reading Naileen’s story.  We hope that her angels will help us guide more potential life-savers to join the bone marrow registry.  It can start with you.

JOIN NOW

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Surviving Cancer While Being Ethnically Diverse

Celebrating Diversity

We live in a world that is becoming more ethnically diverse.  This diversity makes everyone of us richer in experience, knowledge and understanding.  Everyday we observe different cultures, practices, foods, and religions. We recognize people for who they are, with different skin color, dress and speech.  

We understand that diversity makes each one of us unique.

We celebrate it.  We honor our heritage and our own ethnic background.  We tell stories and share traditions with our sons and daughters, and we reflect on the uniqueness that makes us who we are.  

The Challenge

For patients suffering from a blood cancer like leukemia, lymphoma or sickle cell, being ethnically diverse can challenge their survival.

70% of patients in need of a bone marrow or stem cell transplant, do not have a matching donor in their family. As a result, they rely on the NMDP registry, managed by Be The Match, to find a potential donor, a matching donor.

The best chance for a match is to find someone of similar ethnic ancestry who is willing to donate stem cells or bone marrow.

Unfortunately, many ethnicities are currently underrepresented on the registry, making it more difficult for those patients to find their match.

The Icla da Silva Foundation focuses on adding more ethnically diverse donors to the Be the Match registry. We strive to educate and inform more people about the importance of adding yourself to the registry, and giving more hope to patients who are searching for a potential donor.

 

Answering The Challenge

There are 3 common questions regarding becoming a potential donor, and giving a patient a second chance at life.

A. Is It Difficult?

Joining the registry to be included in patient searches is easy. Click any of the links on this page, set up an account with email and password, and answer a few questions. A swab kit will be sent to your home. Once you swab the inside of your cheek and return it to Be the Match, you are entered into the registry and included in patient searches.

Everyone should do it.

The total registration process takes about 8 minutes…10 minutes if you type slow like me.

B. Is It Scary?

There has been a lot of misinformation about bone marrow donation in movies and popular culture.

None of it is true.

There are two ways to donate bone marrow, (1) the more common PBSC method, performed at an outpatient clinic, and (2) a donation performed surgically, at a hospital.

  1. 80% of donors make their donation through PBSC (stem cell donation), which is a non-invasive outpatient procedure. PBSC donors receive daily injections of a drug called filgrastim for five days, to increase the number of blood-forming cells in the bloodstream. Then, through a process called apheresis, a donor’s blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.
  2. 20% of donors do so with a surgical procedure done under general or regional anesthesia in a hospital. While a donor receives anesthesia, doctors use needles to withdraw liquid marrow from the back of the pelvic bone.

C. Is It Expensive?

The cost to donate bone marrow or stem cells is 100% free and doesn’t utilize your insurance. Be the Match will make sure that you have everything you need to donate. Whether it’s a ride to a transplant center, a letter explaining your donation to your employer, or help with childcare, Be the Match will be there for you.

Consider A Simple Solution

Join the Registry

Everyone can become part of the solution by joining the Be The Match registry. Inform your family and friends about the importance of adding themselves to become potential donors. You may become a life saver to a patient in need, a patient who does not have a match.

What would you do if you were faced with the challenge of dealing with a blood cancer like leukemia or sickle cell? Where would you go to search for a matching donor? How would you find someone who shares a similar ethnic background to you? There are over 14,000 patients who currently need a matching donor. Many will not survive because they can’t find someone like them, someone like you.

Remember, ethnically diverse patients are not well represented on the registry. If you are ethnically diverse, you are the only one who can change this fact.

JOIN THE REGISTRY

If you have already registered, thank you. There are other ways that you can help us add more diversity to the registry.

Host A Drive

Are you involved with a group or organization that is ethnically diverse? Join forces with us and host a donor drive at your school, work, or social organization.

We do all of the work, you just have to make the introductions.

HOST A DONOR DRIVE

Volunteer

You can also volunteer, and work with us to make our donor drives bigger, better and more inclusive.

BECOME A VOLUNTEER

The Donation Process

Still have questions about the donation process?

DONATION PROCESS

Please join the registry and give greater hope to patients in need, it’s their only chance for survival.

Remember, you may be someones cure.

Sign Up. Save a Life.

JOIN THE REGISTRY TODAY

 

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Olga – Todavía Me Necesitan

Ellos Todavía La Necesitan

Olga está luchando contra el cáncer por segunda vez. Ella fue diagnosticada por primera vez con leucemia en el 2016, y entró en remisión. En 2018, luchó durante meses con cansancio, dolores de cabeza constantes y hematomas extraños. En marzo, le diagnosticaron AML, leucemia mieloide aguda. El AML es un cáncer de la sangre y la médula ósea y en general, empeora rápidamente si no se trata. Su mejor oportunidad de sobrevivir es un trasplante de médula ósea.

Olga es madre de tres hijos y abuela de dos nietos. Tiene 52 años. Su familia emigró hace 15 años de su pueblo pequeño, San Buenaventura, en Coahuila, México. Vinieron buscando un mejor tratamiento para su hija Betty, que padecía de una deficiencia crónica de crecimiento. Tomó 8 años para que Betty se recuperara y para entonces, habían formado una vida aquí.

Ella ha estado casada por 30 años. Su esposo, Jesús, trabaja en la construcción y es el sostén principal de la familia. “Trabajaba en la tienda de segunda mano de mi madre en México, pero desde que llegamos aquí me he quedado en casa para cuidar de los niños y la casa,” dijo ella. No poder cuidar de su hogar es lo que más le frustra a Olga de tener cáncer, ella siempre está cansada. La familia se mudó aquí hace 15 años para buscar ayuda para su hija y ahora las cosas han cambiado. Betty dejó su trabajo para cuidar a su madre a tiempo completo.

Una temperatura elevada y un recuento bajo de glóbulos blancos hacen que Olga regrese al hospital, con Betty a su lado día y noche. “No fue así la primera vez”, dijo Olga. “Siento que me dan de alta solamente para dar la vuelta y regresar”. Ha sido hospitalizada muchas veces desde que recibió su segundo diagnóstico en marzo del 2018.

Olga no tiene seguro médico y le dijeron que las únicas opciones para el tratamiento eran el MD Anderson Center en Houston, o buscar asistencia médica en México. La historia de la familia con el sistema médico en México es lo que los llevó aquí en primer lugar. “Aquí trabajan contigo si no puedes pagar de inmediato“, dijo Betty. “En México, si no tienes el dinero por adelantado, no recibes tratamiento“.

Se Necesita Un Pueblo

La familia está agradecida por la ayuda que han estado recibiendo. Estaban agradecidos de encontrar un médico del Medical City Dallas Hospital en Dallas, Texas, que aceptó realizar el procedimiento una vez que se encuentra un donante compatible. La Fundación Icla da Silva está ayudando a la familia realizar pruebas de compatibilidad a los hermanos y hermanas de Olga tanto en los Estados Unidos como en México. Solamente alrededor del 30 por ciento de los pacientes encontrarán un donante compatible dentro de su familia. El otro 70 por ciento recurre al registro Be The Match para encontrar un donante compatible. La compatibilidad se basa en proteínas o marcadores de HLA (antígeno leucocitario humano) que se encuentran en casi todas las células del cuerpo. Ayudan al sistema inmune a identificar las células que pertenecen, y provocan las defensas del sistema inmune del cuerpo. Los tipos de HLA son heredados y personas de la misma ascendencia étnica suelen ser más compatible.

Desafortunadamente, las minorías están subrepresentadas en el registro, lo que hace que sea más difícil para esos pacientes encontrar un donante compatible. El equipo de Icla da Silva se enfoca en cambiar este desafortunado hecho y continuamos realizando campañas de donación de médula en todo el país en un intento de educar y agregar más diversidad al registro Be The Match.

Olga tiene fe en que encontrará una donante compatible y ella se recuperará. Refiriéndose a su familia, “todavía me necesitan“, dice ella, “Dios me da fuerza“.

Únete al registro para ayudar a Olga u otro de los 14,000 pacientes que buscan un donante.

ÚNETE AL REGISTRO

 

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Olga’s Story – They Still Need Me

They Still Need Her

Olga is battling cancer for the second time. She was first diagnosed with leukemia in 2016, and went into remission. In 2018, she struggled for months with chronic fatigue, constant headaches and strange bruising. In March, she was diagnosed with AML, acute myeloid leukemia. AML is a cancer of the blood and bone marrow and usually gets worse quickly if not treated. Her best chance of survival is a matching bone marrow transplant.

Olga is a 52-year-old mother of three and grandmother of two. Her family emigrated to the Dallas area fifteen years ago from a small-town named San Buenaventura, in Coahuila, Mexico. They came seeking better treatment for their daughter Betty, who was suffering from a chronic growth deficiency. It took 8 years for Betty to recover and by then, they had formed a life here.

She has been married for 30 years. Her husband Jesus works in construction and is the primary breadwinner for the family. “I used to work at my mom’s second-hand store in Mexico, but since we got here I’ve stayed home to care for the children and the house,” she said. Not being able to care for their home is what frustrates Olga the most about having cancer, she is always tired. The family moved here 15 years ago to seek help for their daughter and now the tables have turned. Betty has quit her job in order to care for her mother full-time.

An elevated temperature and low white blood cell count has Olga back in the hospital, with Betty at her bedside. “It wasn’t like this the first time,” said Olga. “I feel like they keep releasing me just so I can turn around and come right back.” She has been hospitalized many times since receiving her second diagnosis in March of 2018.

Olga has no health insurance and they have been told that the only options for treatment were the MD Anderson Center in Houston, or to seek medical assistance in Mexico. The family’s history with the medical system in Mexico is what led them here in the first place. “Here they work with you if you can’t afford to pay right away,” she said. “In Mexico, if you don’t have the money upfront, you won’t receive treatment.”

It Takes A Village

The family is thankful of the help they have been receiving. They were grateful to find a doctor from Medical City Dallas Hospital in Dallas, Texas, who agreed to perform the procedure once a compatible donor is found. The Icla da Silva Foundation is helping the family by testing Olga’s brothers and sisters in both the United States and in Mexico. Only about 30 percent of patients will find a match within their family. The other 70 percent turn to the Be The Match registry to find a matching donor. Compatibility is based on HLA (human leukocyte antigen) proteins or markers found on almost all cells in the body. They help the immune system identify self-cells from non-self-cells, which trigger the bodies immune response. HLA types are inherited and finding a compatible match increases with people of the same ethnic ancestry.

Unfortunately, minorities are underrepresented on the registry, making it more difficult for those patients to find a matching donor. The Icla da Silva team is focused on changing this unfortunate fact and we continue to hold marrow drives throughout the country in an attempt to educate and add more diversity to the Be The Match registry.

Olga has faith that a match will be found and she will recover. Referring to her family, “they still need me,” she says, “God gives me strength.”

Please join the registry to help Olga or one of the other 14,000 patients searching for their match.

join the registry

 

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Nada es Imposible

Miguel está celebrando el aniversario de su trasplante de médula ósea … Está celebrando la vida. Él insiste en que “nada es imposible”.

Miguel Oriol Torres López, es de Barranquitas, un pequeño municipio de montaña en el centro de Puerto Rico. Es un ávido ciclista de montaña y se acerca a los 10 años como sobreviviente de trasplante de médula ósea.

Insiste en que su experiencia y su trasplante lo hicieron más fuerte.

Su Médula ósea Dejó de Funcionar

Era el 2007, mientras estudiaba en la Universidad Politécnica en San Juan, cuando Miguel fue diagnosticado y hospitalizado con anemia aplásica. La anemia aplásica es una condición rara y grave. La médula ósea deja de producir suficientes células sanguíneas, lo que deja al paciente cansado y en riesgo de infecciones potencialmente mortales. Afecta la producción de glóbulos rojos y glóbulos blancos, y a las plaquetas.

Durante el año siguiente, Miguel recibió tres tratamientos diferentes con la esperanza de estimular su médula ósea en el Hospital Auxilio Mutu en San Juan. También recibió transfusiones semanales de sangre y plaquetas. En septiembre del 2008, estaba combatiendo una infección severa cuando un doctor le dijo a su familia que era posible que no sobreviviría. Su hematólogo, Dr. José A. Lozada lo trasladado por aire a Houston, TX, al MD Anderson Cancer Center, donde estabilizaron su condición y comenzó el proceso para un trasplante de médula ósea.

Un Trasplante Exitoso de Médula ósea

A pesar de la gravedad de su situación, resulta que Miguel fue muy afortunado. En unos pocos meses, su condición se estabilizó y sucedieron las siguientes cuatro “imposibilidades”:

  1. Se identificó un donante compatible. (Los pacientes hispanos y latinos solo tienen un 46% de probabilidades de encontrar un donante compatible en el Registro).
  2. El donante dijo que sí a una donación de médula ósea. (Solo el 37% de los donantes hispanos / latinos dicen sí cuando reciben la llamada).
  3. Miguel recibió un trasplante de médula ósea para salvarle la vida el 4 de noviembre de 2008.
  4. 100 días después, su nueva médula ósea comenzó a producir células sanguíneas.

Las probabilidades estaban en contra de Miguel, pero él las venció. Regreso a su ciudad natal en Puerto Rico. Continuó viajando al MD Anderson Cancer Center para chequeos. Después de 2 años en el hospital y con todos los medicamentos y tratamientos de quimioterapia, su cuerpo estaba débil. A través de un amigo, que era un entrenador de spinning, Miguel comenzó a tomar clases de spinning para recuperar las fuerzas. Su amigo también lo presentó a las carreras de bicicleta de montaña.

Después de su Trasplante

Las carreras de bicicletas eran nuevas para Miguel. Le dio algo que había estado perdiendo después de todo ese tiempo en el hospital: movimiento, libertad y entorno natural. En muy poco tiempo, comenzó a entrenar y conoció a muchos nuevos amigos. También empezó a participar en carreras de bicicleta de montaña de larga distancia. Sus finales de carrera fueron bastante impresionantes:

Regresó a la Universidad Politécnica y terminó su carrera de ingeniería eléctrica. Trabaja medio tiempo como ingeniero eléctrico y también trabaja tiempo completo en la farmacia de su padre.

Miguel dice que su trasplante lo hizo más fuerte que antes, tanto mental como físicamente. Él está muy agradecido.

Ayudando a Otros

A medida que Miguel se aproxima al décimo aniversario de su trasplante de médula ósea, quiere involucrarse más en la creación de conocimiento sobre cómo unirte al registro Be The Match. Al contar su historia, quiere motivar a personas que se unan la registro y animar a los pacientes que necesitan un trasplante de médula ósea a que nunca pierdan la esperanza. Un trasplante de médula ósea le salvó la vida. Él insiste en que lo hizo más fuerte que antes, tanto física como mentalmente. “Podemos volver a la normalidad después de un trasplante … puede fortalecernos”.

“Nada es Imposible”

Puedes unirte al registro en apoyo de Miguel haciendo clic en este enlace:

ÚNETE AL REGISTRO

También puedes ayudar a aumentar el conocimiento sobre la importancia sobre unión al registro. Miguel fue muy afortunado. No todos los pacientes logran encontrar un donante compatible. Simplemente no hay suficientes personas registradas para ser donantes potenciales. Puedes cambiar eso uniéndote al registro y difundiendo la palabra. Tú, tus amigos y tus familiares pueden convertirse en salvavidas … nada es imposible.

Para aquellos que no están listos o no pueden unirse al registro, Miguel te recuerda que una pequeña donación ayuda a nuestros esfuerzos para agregar donantes más étnicamente diversos al Registro Be the Match. La Fundación Icla da Silva se concentra especialmente en proporcionar resultados equitativos para los pacientes durante el trasplante, y eso no puede suceder hasta que exista más diversidad en el Registro. Dona en honor de Miguel a:

HAZ UNA DONACIÓN

Por favor ayúdanos a compartir la historia de Miguel. Nada es imposible; como Miguel, creemos que más personas se unirán al registro y pacientes que sufren ganarán más esperanza.

ÚNETE AL REGISTRO

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In Memory: Vivianna Sophia Lane

With tremendous sadness, we were recently notified of the untimely passing of Vivianna Sophia Lane. She died Tuesday, August 7th at the Lurie Children’s Hospital of Chicago. We extend heartfelt condolences to her family, her friends and anyone who was fortunate to come in contact with her. Sophia was a talented, passionate and hard working young woman who was fighting a battle with Acute Lymphoblastic Leukemia. We were working with Sophia and her family in their search to find a matching bone marrow donor. Sophia was 21 years old.

Her family has notified us that they would like us to keep her hope alive; ” if you haven’t done so, please sign up to be a bone marrow donor. One hundred and forty people signed up to save her life, and others. It made her so happy in her last days.”

join the registry


Sophia’s Search for a Matching Donor

Vivianna “Sophia” Lane is a 21 year old college student at Lake Forest College, in Lake Forest, IL, a suburb north of Chicago. She is working towards her bachelors degree, a double major in Business and Studio Art.

Sophia is energetic, creative, outgoing and well rounded. She is passionate about art, golf, singing, biking and swimming. She is hard working. Her dedication to golf includes competing on the boys team in high school, caddying, coaching and working at a golf shop. Her devotion to art encompasses volunteering, two internships and her first solo exhibition at the Evanston Art Center.

Sophia also has B cell Acute Lymphoblastic Leukemia. She was diagnosed last year (November 2017), underwent chemotherapy treatments and relapsed just last month (July 2018). Her doctors are working to get her into remission so that she can undergo a stem cell transplant. Sophia does not have a sibling match and will rely on the Be the Match registry to find a lifesaving donor.

We need to find a matching stem cell donor for Sophia. The only way to do this is to ask more people to join the registry.

Joining is easy. Click the link, setup an account with an email and password, and answer a few questions. A swab kit will be sent to your home. Once you swab the inside of your cheek and return it to Be the Match, you are entered in the registry and included in patient searches.

More than 14,000 patients are searching every year. Their cure is inside you. You may save a life.

Please join the registry for Sophia: join the registry

To find more information about the donation process, please click here.

If you have already joined, please help us share Sophia’s story so that we may get others to consider becoming a potential life-saver.

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Nothing Is Impossible

Miguel is celebrating the anniversary of his bone marrow transplant…Miguel is celebrating life.  He insists “nothing is impossible”.

Miguel Oriol Torres Lopez, is from Barranquitas, a small mountain municipality in the center of Puerto Rico. Miquel is currently an avid mountain bike racer, and approaching 10 years as bone marrow transplant survivor.

He insists that his experience, and his transplant, made him stronger than he was before.

His Bone Marrow Stopped Working

It was 2007, while studying at Universidad Politécnica in San Juan, when Miguel was hospitalized and diagnosed with aplastic anemia. Aplastic anemia is a rare and serious condition. The bone marrow stops producing enough blood cells, leaving the patient feeling fatigued and at risk for life threatening infections. It affects the production of both red and white blood cells, as well as platelets.

During the next year, Miguel received three different treatments in the hopes of stimulating his bone marrow at Hospital Auxilio Mutu in San Juan. He also received weekly blood and platelet transfusions. His body was suffering from infection when in September of 2008, a doctor told his family that he could die within the week. His hematologist, Dr. Jose A. Lozada had him air lifted to Houston, TX to the MD Anderson Cancer Center, where they stabilized his condition and began the process for a bone marrow transplant.

A Successful Bone Marrow Transplant

Despite the severity of his situation, it turns out Miguel was very fortunate. In a few months time, his condition stabilized, and the following four ‘impossibilities’ happened:

  1. A matching donor was identified. (Hispanic and Latino patients only have a 46% chance of finding a matching donor on the Registry.)
  2. The donor said yes to a bone marrow donation. (Only 37% of Hispanic/latino donors say yes when they get the call.)
  3. Miguel received a life-saving bone marrow transplant on November 4, 2008.
  4. 100 days later, his new bone marrow began producing blood cells.

The odds were stacked against Miguel, but he beat them. Miguel moved back to his hometown in Puerto Rico. He continued to travel back to the MD Anderson Cancer Center for check-ups. After 2 years in the hospital, and with all of the medications and chemo treatments, his body was weak. Through a friend, who was a spinning coach, Miguel started taking spinning classes to gain back body strength. His friend also introduced him to mountain bike racing.

After His Transplant

Bike racing was new for Miguel. It gave him something he had been missing after all of that time in the hospital – movement, freedom and natural surroundings. In a very short time, he met many new friends and began training, entering and placing in long distance mountain bike races. His finishes were quite impressive:

He went back to Universidad Politécnica and finished his electrical engineering degree. He works part time in electrical engineering and full time at his father’s pharmacy.

Miguel says that his transplant made him stronger, both mentally and physically, than before. He is very grateful.

Helping Others

As Miguel approaches the 10 year anniversary of his bone marrow transplant, he wants to become more involved in creating awareness about joining the Be The Match registry. By telling his story, he wants to motivate people to join, and encourage patients in need of a bone marrow transplant to never lose hope. A bone marrow transplant saved his life. He insists it made him stronger, both physically and mentally, than he was before. “We can be normal again after a transplant…it can make us stronger.”

“Nothing is Impossible”

You can join the registry in support of Miguel by clicking this link: join the registry

You can also help increase awareness about the importance of joining. Miguel was very fortunate. Not every patient is successful in finding a matching donor. There simply aren’t enough people who have registered to become a potential donor. You can change that by joining the registry and spreading the word. You, your friends and family may become life savers…nothing is impossible.

For those who are unwilling or not able to join the registry, Miguel is reminding them that a small donation helps our efforts to add more ethnically diverse donors to the Be the Match Registry. The Icla da Silva Foundation is especially focused on providing equitable outcomes for patients as they go through transplant, and that can’t happen until there is more diversity in the Registry. Donate in Miguel’s honor at:

make a donation

Please help us share Miguel’s story. Nothing is impossible; like Miguel, we believe that more people will join the registry and patients who are suffering will gain more hope.

join the registry

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Veronica’s Story – Searching for a Matching Donor

It was winter and she had a bad cold.  The cold had triggered an asthma attack and her parents were worried.  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 Needs Our Help

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.

Finding a Bone Marrow Donor

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

Joining the Registry

The steps to join the registry are simple:

  1. Register online by clicking the link.
  2. Set-up an account with a password, and answer some basic background and eligibility questions.
  3. Receive a swab kit in the mail so they can get a copy of your HLA marker by swabbing the inside of your cheek with a q-tip.
  4. Return the swab kit so you can be added to the registry.

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

 

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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.

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What if You Could Save a Life?

What if you were the only one who could save a life?  If you could be that hero, the one that someone has been looking for and perhaps the only one in the world who fits the criteria, would you do it?  Would you take the necessary steps and give life to another?

Every year, more than 14,000 patients are diagnosed with blood cancers like leukemia, lymphoma and sickle cell anemia. For these patients, a stem cell or bone marow transplant is their only hope for survival.

70% do not have a matching donor in their family. They are reliant on finding a donor through the Be The Match bone marrow registry. It’s the largest and most diverse registry in the world, but it’s not large enough, or nearly diverse enough.

The Icla da Silva Foundation is the largest recruitment center for Be The Match. Our focus is on supporting under represented communities, and we work tirelessly to find bone marrow matches for minority groups and mixed-background ethnicities whose current donor pool is either far too small, or almost non-existent.

The simple fact is that not enough people of ethnic diversity have joined the registry. This has resulted in a registry that is currently under represented for many ethnic segments. We are working to change this.  You can help by joining and asking those close to you to do the same.

JOIN THE REGISTRY

Aashim’s Search

Aashim Joy is one of the potential recipients still searching for his perfect bone marrow match.  He was diagnosed with B-Cell Type Acute Lymphoblastic Leukemia in July last year, and he requires a bone marrow transplant.  Like many blood cancer sufferers, he has no other hope of beating the disease.

One year into his marriage, his diagnosis was a shock and the new couple’s American Dream seemed to fade before their eyes.  Involved in the financial sector in New York City, the couple had recently relocated from Bangalore to start a new life together in the Big Apple when Aashim was diagnosed.

Reaching out to the Be The Match Registry, the largest in the world, Aashim and Reema were hopeful of a quick match and a happy ending.  Despite their time and enthusiasm, the search has been longer than expected. People of Indian descent are not common on the registry, which makes the genetic and ethnic aspects of finding a perfect match more difficult.

“The Indian community is underrepresented [on the bone marrow donation registry], which makes it more difficult to find a matching donor.”

The search is still on for Aashim’s perfect bone marrow match.  Both he and Reema remain positive of finding a match, urging everyone they meet to sign up and join the bone marrow registry.  Not only for the sake of Aashim and his lovely wife, but for other patients who walk this difficult road beside them.

Read more about Ashim’s story here and here.

Joining the Registry

Signing up as a potential donor is simple.  If you match a patient, it is obviously a life-saving experience for the recipient, but it can also be life-changing for the donor. You are literally giving someone a second chance at life.

The process involves clicking the link, setting up an account with an email and a password, and providing some general health and ethnicity information.  You will receive a swab kit in the mail.  Once you return the kit, you will be included in searches for patients in need of a matching donor.

If you match a patient and are eventually asked to donate bone marrow, please say yes.  The process is simpler than you think.  You can read about it here.  The bone marrow cells in your body are replenished within four to six weeks after the procedure and your life goes on.  

Each person who joins the Registry is a new potential match for a patient in need.

JOIN THE REGISTRY

Every Bit Helps

If bone marrow donation is not an option for you, the following are also helpful ways to get involved and help a patient in need:

Heritage and Ethnicity Matter!

Aashim is a wonderful example of where ethnicity and genetics play a pivotal role in bone marrow donation.  The Indian donor pool is, unfortunately, not representative or diverse enough to cater to such a large population; and Aashim has not been able to find a suitable donor match thus far.  The larger the pool of donors, the more diverse the pool becomes, significantly improving the probability of finding a match.

Success Stories

There is hope.  Many of our success stories are a testament to perseverance and tenacity, often at the hands of an invested team of supporters and medical professionals. There are victories worth mentioning, and heroes who decided to take the leap.

The Flaherty Brothers

At age 3, William was diagnosed with hemophagocytic lymphohistiocytosis (HLH).  The immune system attacks the body’s own organs instead of protecting it against foreign invaders.  Charles was only seven at the time, but turned out to be a perfect match for his little brother and insisted on donating his stem cells to save William.  The procedure was on a Thursday and Charles was back at school by the Monday morning remembering the worst part of the whole experience as having to take off the bandage!

Both brothers are now healthy and living life to the full back in Puerto Rico.  After the procedure, Charles was treated to a ski trip with his father and unbelievably, it has lead to a lifelong passion.  He was Puerto Rico’s single star on the Alpine Ski team at the 2018 Pyeongchang Olympics.

Read more about Charles and William’s story.

Mya

Smiling is a universal language, and Mya is an expert.  This 9-year-old has been through an epic battle against T-cell leukemia and came out on top.  Described as a ‘beautiful, positive, joyful spirit,’ she and her family are finally seeing the light after years of struggle against this devastating illness.

Chemotherapy was ineffective in treating her condition. Thankfully one of Mya’s brothers was a 100% percent match and he gladly donated his bone marrow stem cells. Her recovery is going well, but the treatment is expected to continue for the next two to five years, which means the financial strain on the family is huge.

Read more about Mya here.

Tancrede

Born at 27 weeks, Tancrede Bouveret was the spark in his father, Luc’s, eye – a tiny, perfect addition to the family.  At age of eleven he was diagnosed with Myelodysplastic Syndrome (MDS), which eventually progressed into Leukemia. Unfortunately, Tancrede’s little brother was not a suitable donor (only 25% of siblings are).  

After an extensive search in Brazil, the U.S.A and France, the excited family was able to locate a 100% percent match and Tancrede was saved.  Complications resulted in an extra long hospital stay and a need for more lymphocytes, which his donor gladly provided. On October 18, 2017, Tancrede met his bone marrow donor for the first time at the Icla da Silva Hope Gala in New York City.  It was an unforgettable moment of shared joy and hope for humanity.

Read Trancrede’s story.

They Said Yes

The Icla da Silva Foundation has the privilege of seeing successful donation efforts and those which make them possible.  Here are three of our favorite donor stories:

Join the Movement

So, are you open to the possibility of saving someone’s life?  Take the leap and register as a bone marrow donor.  Help however and whomever you can, because life is short and everyone deserves an opportunity to flourish in the time we have been granted.

Thanks for reading.  Please share.

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