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
Taking 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 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 ItskowitchAnother Barrier Removed When No One Else Could Help
The Icla da Silva Foundation goes the ‘extra mile’ to ensure that another life is saved.
Young Herzel was inspired to become a nurse after surviving thyroid cancer in 2017. The remarkable care that she received as a patient impacted her greatly, and she enrolled in nursing school with a desire to help others.
But while preparing for her exam to become a Certified Dialysis Nurse, Herzel was diagnosed with Acute Myeloid Leukemia (AML).
A bone marrow transplant was her only chance for a cure, and there were no matching donors for her on the registry.
Finding a Donor
The bone marrow transplant team at New York-Presbyterian / Weill Cornell Medical Center acted fast to test her brother Reggie back in the Philippines as a potential donor.
Luckily, he was a 100% match.
However, this fantastic news still presented a barrier.
Herzel is a smart, hard-working young woman. Although she was unable to maintain her employment during so many visits and treatments at the hospital, she kept her living expenses low and paid her bills on time.
But the expense to bring her brother to the U.S., so he could transplant his stem cells, was unaffordable at the moment. Her savings had already been depleted.
She didn’t know what to do. Her doctors wanted to schedule the transplant as soon as possible.
No organization was able to fund international travel for her donor.
A social worker at New York-Presbyterian contacted the Icla da Silva Foundation. After gathering and organizing the necessary paperwork, and thanks to the generous supporters of the Foundation, not only did we provide the funds, we made the flight reservations.
Within days, this life-threatening financial barrier was removed and Herzl’s brother arrived in New York for the donation. The transplant was successful and Reggie saved his sister’s life. They spent a few days together before he returned home to the Philippines.
The gift of life that Herzel received only strengthened her desire to help others.
She passed her nursing exams and recently began working for the NYC Department of Health. Herzel is thankful for the support that she received and has applied to Volunteer for the Icla da Silva Foundation.
We asked Herzel what she would say to the donors who made her brother’s trip possible.
“I want to thank everyone for giving me this opportunity to live a healthy life again. I couldn’t be any more grateful for the Icla da Silva Foundation. I want to help the Foundation as much as I can so other patients like me can have the same opportunity for life.”
You can help us support more patients like Herzel. Your donation will remove barriers for patients needing a bone marrow or cord blood transplant.
Your donation will save lives.
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 ItskowitchAsaya’s Birthday Success Story
After 9 years, Asaya finally received his bone marrow transplant – three days before his 10th birthday!
You may remember Asaya Bullock from earlier stories on our website and social media pages. Asaya suffered from a rare disease called IPEX Syndrome. IPEX is a rare, life-threatening, autoimmune disorder, which caused Asaya to suffer from severe stomach issues, migraines, body aches, rashes, and joint pain for most of his young life.
His only cure was a matching bone marrow donor.
We have been working with Asaya since 2015, recruiting potential marrow donors and providing urgent needs assistance for his family. This video shows 4-year-old Asaya when we first began his search.
There Was No Matching Donor
While thousands of donors were added to the national registry in Asaya’s name, a matching donor was never found.
As Asaya got older, his illness became worse. His health was deteriorating. He was in and out of the hospital multiple times in recent months.
After his original diagnosis, the doctors didn’t believe he would survive past the age of two. He was already living on borrowed time.
Can you imagine the pain and perseverance that his parents have lived with…
“You don’t ever sleep because you know at any point in time your baby could lie down next to you and he doesn’t wake up” – Charlene Bullock
“He doesn’t give up. I don’t give up. We don’t give up” – Vincent Bullock
A Rare Success
The medical team agreed to the family’s request for a ‘haplo’ transplant. A haploidentical transplant uses healthy, blood-forming cells from a half-matched donor. The donor is usually a parent – since each parent represents about half of your genetic make-up.
They are not always successful.
On July 27, 2021, Asaya received a half-matched transplant from his dad.
The transplant was successful.
Three days after his transplant, on July 30th, Asaya celebrated his 10th birthday!
Asaya seems to be doing fine. His body successfully accepted 99.4% of the cells. His doctor says this was rare.
So far, there are no complications and he is eating and drinking on his own, which is a terrific sign.
Fortunately, there was room at the Ronald McDonald House in NYC. Asaya will have to stay for 120 days, remaining close to his hospital while they continue to check his progress.
We wish Asaya a long, healthy, pain-free life…with many, many more birthdays to celebrate!
Help us support more patients like Asaya by considering a donation
Written by: Bret ItskowitchJoin Us on October 17th and Help Save More Lives
The 2018 Hope Gala takes place on Wednesday, October 17th at 6:30 PM. The dinner and dance is black tie optional and will be held at Guastavino’s, 409 east 59th Street in New York City. The Hope Gala is the largest fundraising event for the Icla da Silva Foundation.
Why Are We Celebrating?
The Hope Gala celebrates our achievements and raises funds to continue our fight against leukemia and other diseases treatable by bone marrow transplants.
Thanks to your support, so far this year, the Icla da Silva Foundation has held 1374 donor recruitment drives across the country. At those drives, we have added 20,246 potentially life-saving donors to the Be the Match bone marrow registry. We aren’t finished yet.
Our focus is to increase awareness, and register more donors who are ethnically diverse. Unfortunately, blood cancer patients who are ethnically diverse, have less than a 50% chance of finding a potential match. We want to change that.
Why Should You Attend?
Your attendance and the resulting donations this year, will help us add greater diversity to the bone marrow registry. A portion of the funds raised, also go towards our Patient Support Services program. The program helps patients and their families deal with some of the financial difficulties when presented with a life threatening blood cancer.
Icla da Silva uses it’s knowledge and experience to guide patient families with information, logistics, and emotional support. With the funds raised last year, we have been able to help patients with transportation, lodging and meals related to their bone marrow transplant and treatment. We have also assisted with HLA typing and medical expenses.
Will We See You This Year?
This years Hope Gala will include more than 300 influential guests from the worlds of business, healthcare, the arts, philanthropy, and academia. The evening promises to be an affair to remember. Please extend an invitation to your friends and associates. Cocktails and a silent auction begin at 6:30PM. Dinner and dancing start at 7:30 PM.
JOIN US IN OUR FIGHT TO HELP MORE PATIENTS
please RSVP today