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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.

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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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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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