REMOVING BARRIERS – AARON & RYAN’S STORY
(Updated: May 27, 2023)
Palm Beach Country, Florida
When we first learned about Marelyn and her two boys, they needed financial assistance. The twins, 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 supports patients on their journey to receive a bone marrow or cord blood transplant. For patients demonstrating financial need, we provide grants during treatment.
SUPPORT OUR EFFORTS
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.
It Was 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.
Watch Mom try to explain some of her challenges. It’s a very hard thing to ask for help.
We were happy to provide the family with a grant while the twins were 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 2nd Bone Marrow Transplant Was a Success
The boys have received their second bone marrow transplant. Once again, their mom was the donor.
UPDATE: The boys are doing well and we received a quick update from their mother…look at them now!
We want Marelyn to have high hopes for their future.
Thanks for reading. You can support more patient families like Marelyn, Aaron, and Ryan with a donation. Even the smallest gift can make a huge impact on life during treatment.
Together, we will continue to make a difference for patients in need of a bone marrow transplant.
MAKE A DONATION
Written by: Bret ItskowitchHope and Healing: A Mother’s Story of Her Son’s Sickle Cell Cure
REMOVING BARRIERS – NASIR’S STORY
For nineteen years, Nasir lived a life filled with pain and uncertainty due to sickle cell disease. His mother SueAnn, watched helplessly as her son endured countless complications, blood transfusions, and pain crises.
She vividly remembers the first time Nasir woke up screaming in pain. He was only two months old and his little hands were swollen to the size of a man’s hands.
When she called the doctor, he said Nasir was going through a pain crisis and he prescribed morphine. She remembered thinking, “morphine, for my two-month-old baby, why is this happening?”
That was their struggle for 19 years.
They never knew when the next crisis would strike, or how severe it would be. It was a life filled with pain, uncertainty, and fear. Just like any mother would, SueAnn felt helpless and defeated.
Finding a Cure
Then on one fateful day, everything changed.
They met a doctor who recommended a bone marrow transplant, using stem cells from Nasir’s own body.
SueAnn was hesitant at first, but the doctor explained the process and the expected outcome.
SueAnn described this doctor as “an Angel,” and she suddenly felt full of hope.
With renewed faith, she knew her son Nasir’s life was about to change.
An Autologous Bone Marrow Transplant
Using an autologous bone marrow transplant to treat sickle cell disease is relatively new. The process uses stem cells from your own body, so it doesn’t rely on a matching donor. But it comes with potential complications and challenges.
Nasir went through the treatment, and although it’s still early, his transplant was successful.
SueAnn felt like her sister Lisa, who had passed away from sickle cell disease one year ago, was watching over them and helping guide Nasir through his transplant.
Receiving Support from the Icla da Silva Foundation
As a single mother, SueAnn admits that the process was hard on them.
She could not work because she needed to be with her son during his treatments and transplant. Fortunately, the Icla Cares program provided financial assistance for gas, utilities, and groceries while Nasir was in treatment.
SueAnn is grateful for the support they received. She talked about the strain they endured.
She told us that the Icla da Silva Foundation gave her son joy. After learning about the support, Nasir wasn’t just happy for himself but “excited for the other families who are able to receive a happy, healthy, healed life.”
You Can Help
If you feel inspired by this story about Nasir, please consider donating to the Icla da Silva Foundation. We remove barriers to treatment by providing financial support for expenses during treatment and transplant.
Your gift will remove barriers for a patient in need during their bone marrow transplant.
Written by: Bret Itskowitch
This Beautiful Little Boy is Celebrating his “Re-Birthday”
REMOVING BARRIERS – BRAXSTON’S STORY
Little Braxston is only two-years-old. He recently received a bone marrow transplant to treat neuroblastoma, a cancer that develops from immature nerve cells.
When a patient receives a bone marrow transplant, they celebrate a second “birthday”. It signifies a new beginning!
We were happy that his mom shared photos of that adorable smile.
When a child is diagnosed with cancer, it can be a difficult journey. His family had to travel 70 miles to receive treatment. This is an added expense that wasn’t planned for.
For his parents, every day off work is a day unpaid.
The Icla Cares program provided financial assistance for transportation and groceries on his journey to receive a transplant.
His mom Amber expressed tremendous gratitude from their family:
“The fund helped us a lot. It allowed us to make sure we had transportation to and from Braxston’s appointments [to receive his bone marrow transplant]. It also helped us get his favorite snacks for transplant! Which he loved. It made him feel more like he was at home knowing he had comfort food.” -Amber
Braxston is scheduled to receive radiation and 6-months of immunotherapy. We wish him a full recovery and many more birthdays with his family.
You can assist a patient like Braxston by donating to the Icla da Silva Foundation. Your gift will assist a patient on their journey to receive a bone marrow transplant.
Please donate today. Together we will make a difference for more patients and their families.
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
She 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.
make a donation
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 ItskowitchIcla Cares Helped Darphelia Receive Her Treatment and Transplant
The Icla da Silva Foundation removed another barrier and one more life was saved. The short story below details how we recently helped a patient in need.
Everyone recognizes that gas is expensive, especially now. The cost is particularly high in California.
But what if you didn’t have a choice?
I understand we can’t affect the price of gas, but what if your life depended on a 30-mile car ride to the nearest cancer center? What if you had to take this trip three times per week to receive your life-saving treatment?
This was Darphelia’s barrier.
Due to Multiple Myeloma, a life-threatening disease, Darphelia wasn’t allowed to take public transport or carpool with others.
She certainly couldn’t skip a day and just stay home.
Her illness, and her doctors, had pulled her out of work a while ago. And she had already gone through her retirement savings.
Darphelia told us that this was the first time in her life with no income.
What was she to do?
Icla Cares worked closely with the social worker from UC San Diego Health to get Darphelia the support she needed. We removed her barrier so she could receive repeated, high-dose chemotherapy treatments and then an autologous blood stem cell transplant.
The transplant was successful.
Darphelia is eating again, “eating clean” as she says. She has gained back some energy and is happy just to be able to walk around the block.
“Thank you! I can’t say how much I appreciate the help that I received. It’s difficult to judge a situation without having gone through it yourself.” – Darphelia Lowe, Multiple Myeloma Survivor
Thanks to our friends and supporters, we removed one more barrier and another patient received their transplant.
If you haven’t already, please consider making a donation to help us remove barriers to treatment for patients in need.
Your gift matters more than you know.
Thanks for reading.
Written by: Bret Itskowitch