REMOVING BARRIERS – KRISTINA’S STORY

Burlington, Vermont

Late last year, Kristina did not feel well. All of her energy was gone. She told us that instead of falling asleep at night, she would just pass out.

Something wasn’t right.

She had a consistent, low-grade fever. With the ever-present fear of covid that we all live with, she kept taking covid tests; but they were all negative.

Kristina is a breast cancer survivor. Having lived through that experience, she knew something was wrong.

Unhappy with the medical care that she was receiving, she made an appointment to see a new primary care physician. That doctor immediately scheduled blood work.

While driving home, Kristina received a call from her new doctor.

She was asked to pull over. Her white blood cell count was through the roof. No one understood how she had the strength to stand up, let alone drive. She insisted that she was just minutes from home.

An ambulance was urgently directed to bring her to the hospital. Fifteen minutes after arriving at the hospital, she was diagnosed with blood cancer (acute myeloid leukemia).

After months of chemotherapy, Kristina received her bone marrow transplant.

The transplant was successful, but her follow-up visits will continue for many months.

Kristina has been unable to work since her diagnosis. She is not expected to return to work until April of next year. As a single mom, she is doing the best she can to care for her two boys.

We Are Glad That She Found Us

The Icla da Silva Foundation provides emotional, logistical, and financial support to patients who require a bone marrow transplant.

Kristina lived out of state from the nearest transplant center. Thanks to the generosity of our donors, we were able to help Kristina travel back and forth to receive treatment. We also provided her family with a small grant to essentially keep the lights on during treatment.

These small grants, in addition to emotional support, helped Kristina get back on her feet.

Watch Kristina tell her story. Her heartfelt emotion is powerful as she shares how the Icla da Silva Foundation removed some of her barriers and supported her recovery.

Kristina has had a long journey, and it isn’t over yet, but we look forward to her recovery.

Please consider donating to support the mission of the Icla da Silva Foundation. Your gift will help us continue to remove barriers for patients like Kristina.

As a 501(c)(3) all donations are tax-deductible to the fullest amount allowed by tax law.

Thanks for reading.

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Written by: Bret Itskowitch

Brockton, Massachusetts

Although she has suffered a blood disorder for 13 years, which resulted in cancer, Nicole is a fighter. Her heart is filled with gratitude for the assistance she has received.

Nicole Perkins was diagnosed with a blood disorder in 2009. For years, she kept regular appointments at the Dana Farber Cancer Institute to have her blood checked.

Everything Seemed to Be Fine

Until she was diagnosed with Multiple Myeloma. Nicole also developed a rare disease called Amyloidosis. Both of these conditions are the result of abnormalities in the plasma cells of bone marrow.

Nicole is a hard-working, single mother of three. She never expected to face a life-threatening diagnosis. She also never assumed that she would be unable to work.

She was immediately sent to receive chemotherapy. Her treatments continued every week for 7 months. As expected, chemotherapy takes a lot out of you.

Received Her Blood Stem Cell Transplant

Fortunately, Nicole received her blood stem cell transplant in July of this year.

Her journey is far from over, but she has faith and will continue to fight.

The Icla da Silva Foundation Helped Nicole on Her Journey

Nobody expects to receive a rare, life-threatening diagnosis that requires a bone marrow transplant. Fewer still appreciate the challenges that are associated with treatment and transplant. 

Why We Help

Managing a rare disease while also maintaining a home and raising a family is a difficult task to accomplish. This is why the Icla da Silva Foundation helps bone marrow or cord blood transplant patients with emotional, logistical, and financial support during their journey.

Our goal is to remove barriers. We help patients manage unexpected challenges so they can focus on their treatment.

Watch Nicole share her story.

Please consider a donation that will support more patients and their families who are going through their journey to receive a bone marrow or cord blood transplant.

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Together we will make a difference.

Written by: Bret Itskowitch

Reina Martinez Hernandez was not yet 2-years-old when she was diagnosed with Juvenile Myelomonocytic Leukemia (JMML). JMML is a rare and aggressive blood cancer that affects young children.

After a cycle of chemotherapy, Reina and her family relocated from South Carolina to receive treatment at the Children’s Hospital at Montefiore in the Bronx, NY.

She was immediately admitted to the hospital in January of 2022.

Her only chance for a cure was a bone marrow transplant. Unfortunately, she has no siblings and no match was found in the worldwide bone marrow registries.

Removing Barriers to Find a Match

The transplant team at Montefiore reached out to the Icla da Silva Foundation to provide financial assistance for HLA testing. They needed to see which parent was the best match for a Haploidentical Bone Marrow Transplant.

A haploidentical transplant is a breakthrough process that uses cells from a half-matched donor to replace cancerous cells. The donor is typically a family member.

With support from the Icla da Silva Foundation, both parents were tested. Her mom was identified as the best match.

On April 11, 2022, Reina received a bone marrow transplant and is doing amazingly well.

More Barriers

Being so far from home to receive this breakthrough treatment has resulted in critical financial stress for the family. Thanks to the Icla da Silva Foundation’s generous supporters, the Foundation was able to provide Reina’s family with two months of lodging during her transplant.

We are happy to see the beautiful smile on Reina’s face.

The Icla da Silva Foundation continues to remain engaged with the family while they wait to return home with their healthy baby girl.

Thanks for reading. Your gift can help support more patients like Reina.

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Removing barriers so a little girl can receive her life-saving treatment.

Valery Hernandez is a 9-year-old girl from the Dominican Republic. She was diagnosed with acute lymphoblastic leukemia in 2019. After two years of chemotherapy at the Instituto de Oncologia in the Dominican Republic, her cancer finally went into remission.

But the leukemia was so aggressive that it returned after only five months.

While a bone marrow transplant was her only option, the hospital in DR does not perform pediatric bone marrow transplants.

The medical team there referred her to the Icla da Silva Foundation.

We helped identify a transplant center in the U.S., Nemours Children’s Health, for her bone marrow transplant. After reviewing her case, a study for CAR T-cell therapy was identified at the National Institute of Health (NIH).

A team of doctors were interested in Valery’s case for a clinical trial.

What is CAR T-Cell Therapy?

CAR T-cell therapy is a treatment in which a patient’s T cells (a type of immune system cell) are changed in the laboratory so they attack cancer cells. T cells are taken from a patient’s blood. The gene for a special receptor, which binds to a specific protein on the patient’s cancer cells, is added to the T cells in the laboratory. This receptor is called a chimeric antigen receptor (CAR). A large number of these CAR T-cells are grown in the laboratory and given to the patient by infusion.

CAR T-cell therapies, and other antibody-based therapies, are used to target surface proteins found on leukemia cells. The goal is to improve outcomes for patients with blood cancers that do not respond to chemotherapy.

Removing Barriers

The family cried with joy after learning about the clinical trial.

CAR T-cell therapy, followed by a bone marrow transplant, was the best opportunity for long-term survival.

There were many barriers we helped remove in order to give Valery her chance at survival:

• Identify a Transplant Center in the U.S. for her bone marrow transplant
• Petition to get her accepted for the clinical trial at NIH in Bethesda, MD
• Support her application for a temporary humanitarian visa
• Arrange accommodations at NIH
• Arrange travel for the donor to transplant her blood stem cells

The first phase of the treatment, the CAR T-Cell therapy, was a success.

The Next Phase

Valery is doing great! She has been transferred to Nemours Children’s Health for her bone marrow transplant, which will happen in a few weeks.

The Foundation assisted with the arrival of her donor, Valery’s younger sister.

She is a perfect match.

We have been in constant contact with the family and continue to support them with logistical and emotional needs on their journey to a cure.

We are grateful for the amazing medical teams that are caring for Valery and her family.

Please consider making a donation and help us remove barriers for more patients like Valery.

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Written by: Bret Itskowitch

How A Single Mother Keeps Hope Alive

Samuel is an 11-year-old boy from Astoria, in Queens, New York. He loves to read and play video games.

Since birth, Samuel has lived with a low platelet count. 

Low platelets are caused by a genetic mutation. A low count is less than 150,000 platelets per microliter. Sammy’s count has usually been around 90,000. 

In April 2020, Sammy was tired and suffered from a fever. His mom Alessandra was nervous. She was concerned about covid, so she brought him to the hospital. They diagnosed strep throat and prescribed antibiotics. She thought that was a good thing.

But he didn’t get better. 

His pediatrician diagnosed mononucleosis and prescribed another antibiotic. It didn’t help.

Sammy’s platelet count had gone down to 25,000.

A Mothers Healthcare Journey Begins

Alessandra took Sammy to five different hospitals in New York City, Washington DC, and Boston. They were all large and well respected.  She even called her personal doctor in Brazil. 

They continued to discover abnormalities in his blood, but the findings were not conclusive. Bone marrow failure was suggested as the diagnosis.

Alessandra wasn’t sure what her next step should be. 

She is a strong, intelligent, and confident woman. A single mother to two boys. She would not give up. She kept asking for more information, another opinion.

The doctors have recommended a bone marrow transplant. 

Searching for a Donor

Alessandra’s next step is to find a matching donor for her son. Since both she and her older son have the recessive gene, they cannot donate their blood stem cells.

The doctors have searched the national registry, but there is no match for Sammy. 

Not yet.

Because of his Brazilian heritage, the chances of finding a matching donor are low. There are simply fewer registered donors who would potentially match Samuel.

The Icla da Silva Foundation

Alessandra remembered the Icla da Silva Foundation as an organization that helps to remove barriers for patients who need a bone marrow or cord blood transplant. She learned about the foundation many years ago when a representative spoke at her church in Queens.

Alessandra contacted Airam at the Foundation.  He listened to her story, understood her challenges, and answered her questions. He recommended some strategies to add potential donors and introduced her to the team at Be the Match.

We helped remove the initial barriers that every patient goes through, by providing information about the process, and orientation towards a life-saving solution. The goal is to explain the challenges while reinvigorating hope.

Their search for a matching donor began over the July 4th weekend. 

Alessandra is very hopeful, “tell me what you need me to do. Should I post on social media, meet with the local press, talk to community leaders?”

We answered her with, “yes, yes, and definitely yes.”

Our mission is to remove barriers to treatment for patients who require a life-saving bone marrow transplant. We are helping Alessandra and her son with their search for a potential donor.

We are spreading the word and hoping a match will be found soon. A volunteer group is being formed through the Icla da Silva Foundation to expand support for Alessandra and Sammy in their search for a donor.  

How is Samuel?

Last week, Sammy’s platelet count was 14,000. He is tired, and he has difficulty going up a flight of stairs. He bruises easily. Alessandra tells us, “it’s obvious when his platelets get low, he gets petechiae.” These are red marks on his body, which means he is bleeding into his skin.

Alessandra remains strong, “we will get through this, we will find a solution.” 

To JOIN THE REGISTRY you need to be between the ages of 18-40, in good health, and willing to donate to any patient in need.  Click the link below or text: Swab4Sammy to: 61474 and request a swab kit be mailed to your home. 

If you have already joined the registry and want to help firther, please click the Volunteer button below and register to join our Zoom call.

JOIN the registry

Donate

Together we will save more lives.

Written by: Bret Itskowitch

The Icla da Silva Foundation goes the ‘extra mile’ to ensure that another life is saved.

Young Herzel was inspired to become a nurse after surviving thyroid cancer in 2017. The remarkable care that she received as a patient impacted her greatly, and she enrolled in nursing school with a desire to help others.

But while preparing for her exam to become a Certified Dialysis Nurse, Herzel was diagnosed with Acute Myeloid Leukemia (AML).

A bone marrow transplant was her only chance for a cure, and there were no matching donors for her on the registry.

Finding a Donor

The bone marrow transplant team at New York-Presbyterian / Weill Cornell Medical Center acted fast to test her brother Reggie back in the Philippines as a potential donor.

Luckily, he was a 100% match.

However, this fantastic news still presented a barrier.

Herzel is a smart, hard-working young woman. Although she was unable to maintain her employment during so many visits and treatments at the hospital, she kept her living expenses low and paid her bills on time.

But the expense to bring her brother to the U.S., so he could transplant his stem cells, was unaffordable at the moment. Her savings had already been depleted.

She didn’t know what to do. Her doctors wanted to schedule the transplant as soon as possible.

No organization was able to fund international travel for her donor.

Removing Barriers

A social worker at New York-Presbyterian contacted the Icla da Silva Foundation. After gathering and organizing the necessary paperwork, and thanks to the generous supporters of the Foundation, not only did we provide the funds, we made the flight reservations.

Within days, this life-threatening financial barrier was removed and Herzl’s brother arrived in New York for the donation. The transplant was successful and Reggie saved his sister’s life. They spent a few days together before he returned home to the Philippines.

Giving Back

The gift of life that Herzel received only strengthened her desire to help others.

She passed her nursing exams and recently began working for the NYC Department of Health. Herzel is thankful for the support that she received and has applied to Volunteer for the Icla da Silva Foundation.

We asked Herzel what she would say to the donors who made her brother’s trip possible.

“I want to thank everyone for giving me this opportunity to live a healthy life again. I couldn’t be any more grateful for the Icla da Silva Foundation. I want to help the Foundation as much as I can so other patients like me can have the same opportunity for life.”

You can help us support more patients like Herzel. Your donation will remove barriers for patients needing a bone marrow or cord blood transplant.

Your donation will save lives.

DONATE today

Written by: Bret Itskowitch

This February, Mayra Lopez received a strange text message. It read, “You might be a match, it’s important that you call us.”

Mayra had almost forgotten that she joined the Be the Match registry three years ago, back in February of 2019.

She included herself as a potential donor after being recruited by her sister Karla, a former employee of the Icla da Silva Foundation.

When asked why she joined, Mayra told us that her sister explained how rare it was to find a donor within the Hispanic community.

“Life is so fragile, and I will do whatever I can for my community.”

When Mayra called back after receiving the text, the only information she was given about the patient was that he was a 22-year-old male, and probably of Hispanic descent.

After hearing that, she knew he didn’t have a choice, and neither did she.

“This patient was relying on me!”

She couldn’t just ignore this patient…Mayra said yes to donating her blood stem cells.

We asked her about the donation process. She said she was surprised at how easy it was. “It was so much easier than I expected. No pain, nothing. It took about 4 hours and I napped most of the time.”

In the hours between having breakfast and lunch at the hospital, Mayra saved the life of someone she did not know by donating her blood stem cells.

When we asked what she thought about that, Mayra insisted, “it was a once in a lifetime opportunity”. She told us, “I was excited because something good was happening. A life was saved…it’s a beautiful thing.”

We thanked Mayra for saving a life and explained how the Icla da Silva Foundation had recently expanded our mission to provide emotional, logistical, and financial support to remove barriers to treatment.

We told Mayra, “Just like you, so many patients are relying on us”. She let us know that she understood, and she was excited by our cause. “Resources are limited, and so many people are afraid to put themselves out there. Thanks for everything you do.”

Thank you, Mayra. Thanks for your support, and thank you for saving someone’s life.

Together we can make a difference for patients in need of a bone marrow or cord blood transplant. Together we will save more lives.

DONATE TODAY

Written by: Bret Itskowitch

We were able to remove several barriers during his journey to a cure.

John was diagnosed with leukemia as a 2-month-old baby.

Obviously, his parents were concerned. They needed help understanding all the information about options and challenges. They weren’t sure what to expect or how to navigate the process.

They wanted the details in plain language.

The Icla da Silva Foundation helped John’s family overcome their first barrier.

With so much time traveling to receive treatments, and with so many tests and appointments scheduled, it was impossible for them to keep a regular work schedule. The family had a hard time making ends meet.

This was their second barrier.

Thanks to our generous supporters, we were able to provide funding to assist John’s family with housing needs.

By removing this barrier, his family was able to focus on treatment.

We are happy to report that John recently received a cord blood transplant. His body has accepted the new cells.

(watch a :30 video of his transplant)

We wish this little boy a happy, healthy life; a life that every child deserves.

Our supporters played an important role to ensure that another life was saved.

If you haven’t donated recently, please consider making a gift to help more patient families like John and his parents.

Together, we will continue to make a difference.

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Written by: Bret Itskowitch

The Icla da Silva Foundation removes barriers to treatment for bone marrow patients. Some of these barriers may seem less consequential, but to the mother of a patient with blood cancer, any support can make a world of difference.

We were recently introduced to Josephine and her 13-year-old son Nathaniel by a social worker at the Children’s Hospital at Montefiore. Nathaniel was diagnosed with acute lymphocytic leukemia (ALL), a cancer of the blood and bone marrow. His only cure was a matching bine marrow transplant.

Fortunately for Nathaniel, his little brother was identified as a matching donor and he is receiving a transplant.

But his mother Josephine had another barrier. As a single mom with two children, she needed to afford someone to watch her younger child so she could be with Nathaniel during his treatment after the transplant.

She couldn’t be in two places at once. This was her barrier.

The IclaCares program was able to help a mother fulfill an urgent need. We were able to remove her barrier in less than a week.

Our support enabled Josephine to place one of her challenges on the back burner, so she could focus on her son while he received his bone marrow transplant and treatment.

We were able to help Josephine and her family thanks to the support of our donors.

Please consider making a donation to help us support more patient families with urgent needs. Even a small donation can remove a barrier that isn’t often considered.

The Icla da Silva Foundation appreciates your support. We know patients like Josephine are extremely grateful.

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Written by: Bret Itskowitch

Miguel began to lose hope when his daughter was diagnosed with leukemia. The Icla da Silva Foundation offered to help his family through our Icla Cares program. Watch Miguel share his heartfelt perspective in the video below.

Miguel’s Dilemma

We were first introduced to Miguel and his family through a social worker. His 5-year-old daughter Marieangel had just been diagnosed with leukemia. Like most parents of a child diagnosed with blood cancer, Miguel was lost and confused.

He didn’t know what to do.

We sat down with Miguel to answer all of his questions and explain the process. We reviewed the next steps in plain language. We let him know what to expect and how we could help.

Marieangle received months of chemo treatment and her leukemia went into remission.

Unfortunately, during Covid-19, her leukemia relapsed. At the same time, Miguel lost his construction job.

What is a hardworking family supposed to do? How will they continue to pay the bills while their young daughter is in treatment and waiting for a bone marrow transplant?

How Icla Restored Hope

Miguel began to lose hope. He had nowhere else to turn. The Icla da Silva Foundation offered to help his family. We assured him that we would be there for support throughout his daughter’s treatment.

While financial assistance removes the constant stress of how to pay the bills, providing information and support to Miguel was more important to him. We gave him knowledge and helped him understand. By providing emotional support, he felt more encouraged. He knew that we were here for him, and he recognized the valuable role he played in his daughter’s treatment.

As a result, he regained hope. Miguel rejoined the fight for his daughter’s survival.

Watch this short video – Listen to Miguel share his heartfelt story.

Miguel explains his change in perspective after learning about his daughter’s leukemia.

Support Icla Cares

You can help us assist more patient families like Miguel. With your financial donation, we provide emotional, logistical, and financial support to patients suffering from blood cancers and sickle cell disease. These needs are critical.

Please consider making a financial gift and supporting our lifesaving mission.

DONATE

Thanks for reading/watching.

Written by: Bret Itskowitch