REMOVING BARRIERS – ELLY’S STORY

Durham, California

Elly Moreno-Preciosa is a 6-year-old girl recently diagnosed with Severe Aplastic Anemia. Her only cure was a bone marrow transplant.

Fortunately for Elly, her 11-year-old brother was identified as a matching donor. She received her transplant on June 1, 2022.

Both of her parents are hard-working agricultural workers in Northern CA. They live 200 miles from the Lucile Packard Children’s Hospital, Stanford, which performed the transplant and is continuing treatment until Elly’s immune system is functioning properly.

The Family’s Challenges

Since Elly’s brother was identified as her donor, both parents had to stop working for several months to be individual caregivers for their children. COVID policies do not allow siblings at bedside. Her mother took care of Elly, while her father took care of their son.

Obviously, this had an impact on the family’s limited financial resources.

After the transplant, Elly’s father and brother returned home to work and attend school. But Elly and her Mom remained in the hospital due to complications.

Even after she is released, Elly will require follow-up visits for the next 6-12 months.

That’s a 400-mile round trip.

Undue Stress

Obviously, being diagnosed with a life-threatening disease is distressing. When children are involved, worry and fear impact the entire family. The outlook is unknown.

Patient families are concerned about paying the bills while they are unable to work. In Elly’s case, they are also worried about transportation while half of the family is living 200 miles away for continued treatment.

Individually, each of these barriers can be intense. Combined, they can be extremely overwhelming.

Removing Barriers

The Icla da Silva Foundation removes barriers for patients who require a bone marrow or cord blood transplant. We provide emotional, logistical, and financial support during transplant and treatment.

Thanks to the generosity of our donors, we were able to help Elly’s family with a small grant for rent, transportation, and meals.

Elly is doing well. Her dad and brother travel 400 miles every weekend so the family can be together.

We look forward to learning when everyone is back home. We hope the best for Elly and her family.

Please consider making a donation that will remove barriers for patient families like Elly’s.

With your help, we will continue to make a difference for patients in need of a bone marrow or cord blood transplant.

DONATE TODAY

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.

DONATE

Together we will make a difference.

Written by: Bret Itskowitch

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.

MAKE A DONATION

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 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.

MAKE A DONATION

Written by: Bret Itskowitch

Social distancing has changed the way we react with one another. This pandemic certainly has affected how we save lives. But it will not stop us!

Patients are relying on us in their search for a cure.

The Icla da Silva Foundation is a non-profit with a simple mission. We save lives by recruiting stem cell donors. The more donors we add to the national registry, the greater the likelihood of finding a cure for a searching patient.

A stem cell donor is the only cure to life-threatening diseases like leukemia, lymphoma, and sickle cell.

We used to recruit potential donors by visiting universities, schools, and churches across the country. We held ‘recruitment drives’ where we would explain the needs and challenges to a larger audience. We would set up a table in high traffic areas and invite people to include themselves on the registry. We asked them to be a cure for a patient in need of a transplant.

These public drives are no longer happening. And while no one is sure about the future of social distancing for safety, we cannot afford to ‘wait and see’.

Blood cancer and sickle cell will not wait. A patient searching for their life-saving donor cannot wait to see what happens. Their life depends on finding a matching donor.

So we continue our mission. We are using every platform to spread the word and we continue to register more life-savers.

We post more often on social media, sharing patient stories.

We have been engaging student groups in Zoom meetings, sharing information, and presenting the challenge to those who are willing to listen.

As it turns out, people are listening. They are joining the registry. Many are willing to save a life…but it can be painstakingly slow.

Still, we move forward. Patients and their families are counting on us.

Do you have any ideas to help us reach more people? Do you know someone willing to save a life by adding themselves to the Be The Match registry?

Maybe you have a Facebook group where we could share patient stories? Perhaps you have a Zoom meeting that we could join to present a 10-minute life-saving challenge?

Please send me an email, I would love to learn more and I welcome the invites. You can help us save more lives in this socially distant world.

You can reach me via email here: bret@icla.org

Thanks for reading. Together we will save more lives.

join the registry today

Written by: Bret Itskowitch

Watch a Cancer Patient Finally Meet her Guardian Angel, the Girl Who Donated her Bone Marrow

Every year, the Icla da Silva Foundation hosts our Hope Gala in NYC. The highlight of the evening is the first time meeting between a patient and their life-saving bone marrow donor. The meeting happens on stage, in front of many supporters, most of whom are crying as the patient and donor share their story.

You can read about the Hope Gala here, but this tells the story of one of those patients…and their matching donor.

The Patient – Stephanie Cisne

When Stephanie was a freshman in college, she fainted for no apparent reason. Her friends got her up and took her to the ER. The doctors checked that she didn’t have a concussion, and said that she was just malnourished.

Over the next few weeks, Stephanie continued to feel weak. She came close to fainting a few more times, so she went in for a check-up.

After reviewing her bloodwork, the doctor sent her to a cancer specialist.

On March 10, 2014, Stephanie was diagnosed with AML (acute myeloid leukemia), with an FLT 3 mutation. The cancer was very aggressive. She was hospitalized immediately.

An FLT 3 mutation meant that her body was actually encouraging the growth of the leukemia cells.

The oncologist said that she would need a bone marrow transplant, as soon as possible, in order to survive.

Her family began working with the Icla da Silva Foundation and we immediately started organizing marrow drives.

Fortunately, a matching donor was identified very quickly. On August 6, 2014, Stephanie received her bone marrow transplant.

She Almost Didn’t Make It

But her journey wasn’t over. Many complications followed the transplant.

She battled serious infections and septic shock. One leg was on the verge of amputation. Stephanie had developed a life-threatening liver disease, followed by kidney failure.

Then her body went into a coma. They weren’t sure she would wake up. The doctors gave her 72 hours.

Small Actions – Big Results

Fortunately, Stephanie is a survivor. She took her battles head-on and never showed fear. She is now cancer-free, thanks to her doctors…and her life-saving bone marrow donor.

When we asked her what she would tell people who were considering joining the registry, she reminded us that “small actions can have big results”.

Stephanie explained to us, “That small gesture of swabbing your cheek, to see if you are a match for someone, will literally change your life. When you go through a donation, when you utilize the power you have to save a life, you gain a connection with a complete stranger. You will have made a difference in someone else’s life. You would touch an entire family.”

“You will give the gift of life to a long list of friends and relatives that you never even knew existed.”

The Donor – Crystal Dozier

Crystal was on the other side of the country when she joined the registry in 2007. There was a blood drive at her school and representatives from Be The Match were at that blood drive to sign people up for the registry.

Crystal came to donate blood and she was inspired by another opportunity to help people, so she joined the registry.

In the summer of 2014, while at lunch with her mother and sister, she received the call that she matched a patient in need. Crystal agreed to donate her bone marrow.

What Was the Donation Process Like?

Crystal explains that she did a lot of health-related interviews over the phone, followed by a number of blood tests and screens. In addition to checking that she was the perfect match for a patient, they also wanted to ensure that her health would not be subject to any challenges.

Crystal told us, “The actual donation was over before I knew it…literally. They knock you out for it. And the recovery wasn’t too bad. Everyone involved was so nice and helpful; they made all my appointments, took care of all the paperwork and financials, all I had to do was show up. The whole thing was relatively painless.”

5 years after the transplant, Stephanie and Crystal had the opportunity to meet for the first time. It happened on stage, in NYC, at the Icla da Silva Hope Gala.

In a ballroom filled with 300 onlookers, Stephanie and Crystal met face-to-face. They didn’t know each other…now they are sisters.  You can watch the video below.

Not everyone who joins the registry ends up matching a patient and saving a life, but you have to take that first step and include yourself.

Please consider joining the registry in honor of Stephanie and her donor Crystal.

join the registry

This story ends with a quote from Crystal to Stephanie…”I know the past few years haven’t been easy but you’ve traveled through them with immeasurable dignity and grace. I am so incredibly proud of you and honored to meet you. And just because the donation is over doesn’t mean my involvement in your fight is over. We’re in this together.”

Please consider joining the registry. As Crystal says, “we’re in this together.”

Written by Bret Itskowitch

Watch an 8-Year-Old Girl with a Life-Threatening Disease Meet Her Life-Saving Bone Marrow Donor

It was a once in a lifetime meeting…and it happened on stage, in front of a crowd of 300 tearful witnesses at the Icla da Silva Foundations annual Hope Gala.

The Gala is an end-of-year fundraiser, celebrating achievements and thanking supporters. You can read about it here.

The highlight of that evening was the face-to-face, first time meeting between a patient and their life-saving bone marrow donor.

The Patient – Giliani Lacayo

8-year-old Giliani Lacayo was the patient. She was brought to the stage by her mom Diomaris. Giliani was diagnosed with Kostman’s syndrome, a rare disorder of the bone marrow. Children born with this condition lack the white blood cells that are important in fighting infection.

The doctors told Giliani’s mom that her only cure was a matching bone marrow transplant.

In February of 2015, at the age of 4, Giliani received a cord blood transplant. But unfortunately, one month later, the family was told that the transplant did not take.

As you might expect, Giliani’s mom was upset. She was fearful and very concerned. They had gone through this devastating process…months of hospitalization, four times with pneumonia, intense antibiotic treatments, daily injections of white blood cell boosters…and in the end, they had gotten nowhere.

Her 4-year-old little girl was not yet saved.

The doctors began the search for a matching bone marrow donor on the national registry. There are more than 20 million potential donors listed on the registry, but it’s all about the match. When a patient and donor share the same ethnicity, when they match, the chance for a successful transplant is much higher.

The search for a donor is more difficult for patients like Giliani, who are ethnically diverse. While White patients have a 77% chance of finding a matching donor, the chance of finding one for a Latino patient is only 46%; it’s even lower for African American patients.

Fortunately for Giliani, and despite her Hispanic origin, a match was found. Her name was Marta Sanchez, and she said yes when she received the call, asking her to donate her bone marrow.

The Donor – Marta Sanchez

Marta remembers joining the registry at a drive run by the Icla da Silva Foundation. It was at the Dominican Embassy in NYC. She insists that joining the registry was no big deal. When she learned that she may be the cure for someone like her, she was happy to add her name and information.

Seven years later, she received a call that she was a match for a patient.

Two days before Christmas, in 2015, Marta went to the hospital and donated her bone marrow.

At the time, she was going through some very difficult personal challenges. She had also received a lot of negative reactions from friends who declared it was dangerous and painful.

Marta insists that it was not dangerous or painful. She knew in her heart that it was something she had to do. Someone was counting on her.

Despite all that she was going through, even though she was concerned about not having enough to gift her beautiful daughters on Christmas, she knew that giving the gift of life to a complete stranger would be a blessing from God.

On Christmas Eve in 2015, little Giliani Lucayo received her life-saving bone marrow transplant from Marta Sanchez.

The Meeting

To watch Giliani’s mother express her gratitude for Marta’s selfless act was heart-wrenching. They embraced on stage for the longest time and it was a beautiful thing to witness.

We were fortunate to watch the story unfold on stage.

A young girl suffering from a rare disease. A mother struggling to understand what will happen next. And a selfless woman, navigating her own challenges, who took the steps to unanimously give life to an unknown person.

There wasn’t a dry eye in the house. You can watch them meet in the short video below. At 2:55 little Giliani thanks Marta for saving her life.

You Can Play A Role

Giliani’s mom Diomaris, gave us her reaction to Marta’s life-saving bone marrow donation for her little girl, “There are no words for what she did. I’m thankful for her every day. I pray for her and her family every day. My whole life I will be thankful for her, she is part of our lives, she is part of our family. “

You could save another person’s life. You may be able to give joy to an entire family by donating your stem cells or bone marrow to a patient who doesn’t have a match in their family. Please add yourself to the Be The Match registry by clicking the link below. You will receive a swab kit in the mail. As soon as you return the kit, your name will be included in searches for matching donors.

Be like Marta. Do it for patients like Giliani.

join the registry

Thanks for reading.

Written by Bret Itskowitch

Alfredo Diaz is suffering from an extremely rare disease. A blood stem cell transplant, from a genetically matched donor is his only hope for a cure.

His mom, Natalia Torres, is confident that a matching donor will be found. “There’s one out there, we just have to find him or her.”

We are searching for Alfredo and his family…you can help us by joining the registry and sharing Alfredo’s story.

join for alfredo

read his story

At 6 AM on Sunday, March 10, representatives from the Icla da Silva Foundation were at the Calle Ocho Music Festival in Miami, Florida.

For the team members who attended, it had nothing to do with music. It was all about supporting the family of Julian Morales, with the hope of finding a matching stem cell donor in order to save his life.

It was about Saving Julian.

Fighting For His Life

It was about setting up tables and organizing volunteers so that more people understood the need to join the Be The Match bone marrow registry. It was about eliminating the fear of joining and explaining the fact that only 7% of people on the registry are Hispanic. This is why patients with a Hispanic or Latino background have a more difficult time finding a match. There aren’t enough potential donors on the registry.

Being at Calle Ocho was about doing everything we can to give Julian a 2nd chance at life.

It was about adding more potential life-savers to the registry.

Watch Julian and his Mom on NBC Miami

Not Giving Up

Julian suffers from a rare, life-threatening blood disorder called Dyskeratosis Congenita and bone marrow failure. He has been suffering for 4 years. Since there is no match in Julian’s family, they need to find a donor who is not related. They have been searching for a match for 4 years. There is still no match for him on the Be The Match registry.

Not yet.

As you would expect, Julian’s mother Mayra is desperate to save her son’s life. She is pleading for help from the Hispanic community, “…it’s a matter of life and death.”

For the Icla da Silva Foundation, this past Sunday was about not giving up. We can listen to music later.

Right now we need to find a matching donor for Julian.

You can join the registry by clicking the link. You will receive a kit in the mail which is used to swab the inside of your cheek. When you return that kit to Be The Match, they will test your HLA type to see if you are a potential match.

You or someone you know may be a match for Julian. Please join and share with others.

JOIN THE REGISTRY