Removing Barriers – Aaron and Ryan’s Story
When we first learned about Marelyn Salgado, she needed financial assistance. Her twin boys, Aaron and Ryan, were both diagnosed with sickle cell disease and scheduled to receive a bone marrow transplant.
This is what we do. The Icla da Silva Foundation removes barriers for patients who require a bone marrow or cord blood transplant. For patients demonstrating financial need, we provide grants during treatment.
But when we met, we discovered that this was their second transplant. The boys had already received a stem cell transplant from their mom last year. Due to complications, they needed another one.
A Difficult Situation
They have already been through this once. As a single mom, Marelyn has been unable to work while acting as the caregiver for two 8-year-old boys with a blood disease. She has been without income for an extended period.
She was in a very difficult situation.
Marelyn was alone, afraid, and unsure of the outcome. With sickle cell disease, the boys have lived in pain for years. They had already been through treatment and transplant, and now they needed to do it all over again.
While we were happy to provide the family with a grant while in treatment, Marelyn needed more. She needed emotional support, someone to talk with who could understand her challenges. She needed a shoulder to lean on.
We have been speaking with Marelyn 2-3 times a week in the months before the boys’ second transplant. Days, evenings, and weekends; it didn’t matter. We wanted to help her get through this ordeal and understand that she is not alone.
At the very least, we wanted to provide her with hope.
The boys have received their second bone marrow transplant. Once again, their mom was the donor.
We wish them a full recovery and a chance to just be boys.
We want Marelyn to have high hopes for their future.
Thanks for reading. You can help support more patient families like Marelyn, Aaron, and Ryan with a donation.
Together, we will continue to make a difference in patients’ lives.
MAKE A DONATION
Written by: Bret ItskowitchMother of 5 Receives Her Bone Marrow Transplant
Removing Barriers – Abby’s Story
Abby is a mother of five who lives outside Cleveland, Ohio. Her children are aged 19, 16, 5, 4, and 2. March 7th was her daughter’s 16th birthday. It was also the day Abby was diagnosed with multiple myeloma.
Abby recently received her bone marrow transplant at the Cleveland Clinic.
Her transplant was autologous, which means she didn’t need a donor. They remove and store healthy blood stem cells from the patient, destroy the diseased bone marrow with high doses of chemotherapy, and return the stored stem cells to replace the damaged bone marrow.
Abby’s main barrier was transportation. She needed to visit the hospital every day to remove and store at least two million stem cells. This process was followed by intense chemotherapy treatments leading up to her transplant.
She has been out of work since her diagnosis. Her husband also had to take time off from work while she was in treatment. The hospital requires a 24-hour caregiver for at least 8 weeks; 4 weeks before and 4 weeks after the transplant.
The Family Medical Leave Act protects your job, but FMLA is unpaid, so the family was without income.
They were having difficulty affording travel. Their daily trip was an hour each way to the Cleveland Clinic to prepare for her bone marrow transplant. The cost of gas was a barrier.
The Icla da Silva Foundation removed her barrier with a grant for gas.
When we interviewed Abby before her transplant, we offered additional support.
Please watch her reaction:
All bone marrow transplants have one thing in common, the recovery process takes a long time. It could be a year until her immune system recovers.
Due to the generosity of our donors, we were able to provide the Ramos family with an additional grant to help with utilities and meals during Abby’s follow-up treatment.
“How Am I Supposed to Do This?”
We asked Abby about the impact we have made.
She told us, “if someone could take away just one thing off the list of things to worry about while I go through my cancer treatment, that would mean the world to me. The Icla da Silva Foundation did that for me. You gave me one less sleepless night, one more hour I get to spend with my kids without worrying about making this happen, one less guilt trip because I couldn’t do this on my own.” – Abby Ramos
We wish Abby a full recovery.
You Can Help
Please consider a donation so we can help more patients like Abby.
Cancer puts the patient in a life-threatening situation. Preparing for and receiving a bone marrow or cord blood transplant presents barriers that are not often recognized.
The goal of the Icla da Silva Foundation is to remove some of those barriers so patients can focus on their treatment.
Your gift will help us remove more barriers.
In Abby’s words, “…I couldn’t do this on my own.”
Written by: Bret Itskowitch
Mark Was Diagnosed With the Same Rare Cancer That Took His Father’s Life
Removing Barriers – Mark’s Story
It all started when he was admitted into the emergency room in November 2021 with COVID-19.
Something wasn’t right, and further testing led to a diagnosis of MDS, myelodysplastic syndrome. MDS is a fatal disease caused by a disruption in the production of blood cells.
Although rare, Mark was familiar with MDS.
His father received the same diagnosis many years ago. At that time, his father was considered too old for treatment. They sent him home to get his affairs in order, and he passed away 18 months later.
After several bone marrow biopsies, Mark was admitted to Seattle Cancer Care Alliance. He was fortunate to receive a bone marrow transplant from his brother Dave, who was a 10-out-of-10 match.
Mark received his blood stem cell transplant in June and is recovering.
Due to complications following the transplant, he needed to remain in Seattle longer than expected for follow-up treatment. The hospital requires patients to stay within 30 minutes of the Cancer Care Clinic, but Mark lives outside of Seattle.
With daily appointments, the travel would have been too much for him. He insists it could have ended his life.
Seattle Cancer Care Alliance has a Cancer Care House, which they offer to patients at a discounted rate. Mark and his wife had already exhausted their medical leave and depleted their savings. They have been paying their bills, essentially holding two homes – their regular home and their hospital home – while receiving cancer treatment.
They weren’t sure how they would afford it, but they didn’t have a choice.
Removing Barriers – Icla Cares
A social worker from the hospital reached out to the Icla da Silva Foundation and submitted a request for assistance. Lodging during treatment for a bone marrow transplant is one of those barriers that is not covered by medical insurance. The goal of the Icla Cares program is to remove some of those barriers.
Thanks to our generous supporters, we were able to help Mark with a grant for lodging during his follow-up treatment.
His cancer is currently in remission.
Mark told us he will be “forever grateful”, but we just want him to recover so he can return home and be a grandfather to his 20 grandchildren.
Please watch Mark Share his heartfelt story below.
The Icla da Silva Foundation has been supporting patients in need of a bone marrow transplant for 30 years. The Icla Cares program removes barriers for patients with critical needs.
Our program is reliant on the generosity of donors. Please consider donating to support patients who require a bone marrow or cord blood transplant.
No gift is too small.
Written by: Bret Itskowitch
Farm Workers Must Travel 200 Miles for Their Daughters Treatment
Removing Barriers – Elly’s story
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.
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.
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.
Written by: Bret ItskowitchShe Passed Out in the ER
Removing Barriers – Laneater’s Story
Laneater Johnson was working from home; she didn’t feel well all morning. On her first break of the day, she had chills that made her shake uncontrollably. She realized she had a fever, so she took some Tylenol and decided it was best to go to the emergency room.
She knew something wasn’t right; maybe it was a urinary tract infection.
After the triage assessment they give you when you visit the ER, they sent her to the waiting room to wait for a doctor, but she passed out.
Laneater was rushed to undergo all kinds of tests. They didn’t know what was wrong. She was right about having an infection, her body was septic. When the results came back, she was diagnosed with AML (acute myeloid leukemia).
She was immediately transported to Medical City Dallas to undergo 45 days of intense chemotherapy treatment.
A Long Process
She went through a long process that included many inpatient visits for continued tests and chemotherapy. Those treatments went on for about a year before they determined that she needed a bone marrow transplant.
There were no matching donors for her on the national registry, so they tested her siblings and her children.
Everyone in the family was a half-match, but her youngest daughter represented the best possible match.
In June 2022, Laneater received a blood stem cell transplant from her daughter.
Laneater was not able to work since that very first visit to the emergency room. Even after finally receiving her bone marrow transplant, she still couldn’t return home.
Since she lived more than 50 miles from the transplant center, she was required to stay nearby for continued monitoring until the hematologist released her.
Fortunately, she was released soon after.
The Icla da Silva Foundation supports patients undergoing a bone marrow or cord blood transplant. Our Icla Cares program removes barriers to treatment with emotional, logistical, and financial assistance during treatment.
Thanks to the generosity of our supporters, we were able to help Laneater with a small grant to offset lodging expenses while receiving follow-up treatment at Medical City Dallas. Her stay was shorter than expected, but that didn’t stop Laneater from showing how grateful she was to receive assistance.
“This support came when I was in dire need, I didn’t know where I was going to get the rest of the money.”
It has been a long journey, but her doctors say she is doing well. Laneater looks great, and she smiles as she tells us that she can’t wait for her hair to grow back.
Watch Laneater share her story
We have high hopes for her continued recovery.
Please consider supporting the mission of the Icla da Silva Foundation. Your donation will help more patients like Laneater. Your gift will support bone marrow patients with critical needs.
Together we will continue to make a difference.
MAKE A DONATION
Written by: Bret Itskowitch
How does a Single Mother with Life-Threatening Cancer Keep it Together?
Removing Barriers – Kristina’s Story
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 ItskowitchRemoving Barriers – Nicole Perkins is Filled With Gratitude
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.
Together we will make a difference.
Written by: Bret ItskowitchTwo-Year-Old Receives Her Transplant
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.
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.
Finding a Cure for Valery
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.
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 ItskowitchTaking On a Life-Threatening Journey with Confidence
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.
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
Together we will save more lives.
Written by: Bret Itskowitch