Removing Barriers – Aaron and Ryan’s Story
Palm Beach Country, Florida
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
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.
We were happy to provide the family with a grant while in treatment. We helped with housing, transportation, and support for meals. But, 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. 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 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 ItskowitchFinding 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 ItskowitchHelping a Patient’s Mom Fulfill an Urgent Need
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 ItskowitchCOVID-19 Will Not Stop Us From Saving Lives!
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: email@example.com
Thanks for reading. Together we will save more lives.
join the registry today
Written by: Bret ItskowitchShe Battled Cancer, and Almost Didn’t Make It
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