The Icla da Silva Foundation has been working with 8-year-old Julian Morales and his family for four years. Finally, after hundreds of drives and thousands of sign-ups, a matching blood stem cell donor has been found.
Julian and his family have fought a tough battle…and their journey has only just begun.
Can You Imagine?
Julian was diagnosed with Dyskeratosis Congenita when he was only 3-years-old. DKC is a rare genetic disorder in which the bone marrow does not produce enough blood cells.
Throughout his young life, Julian’s body has endured pain and suffering. He has lesions on his tongue and often cannot eat. It affects the way he speaks. Sometimes he has pain just from walking. He has spent entire evenings crying because of that pain.
Insufficient blood cells mean that Julian has always been immunocompromised. He is constantly in danger of serious infection. This is why his mother has always kept him close….there have been no playgrounds, birthday parties, or water parks for Julian.
Stress on the Family
All the while, his parents Mayra and Dani have had to deal with the unknown. When will a matching blood stem cell donor be found for Julian? When will his life-saving donor join the registry? There has been a lot of confusion and many setbacks. Matches had been identified, but potential donors have said no.
They have had to hide their fear while doing the best they can to manage the hopes and dreams of a little boy with a life-threatening disease. They have kept him safe and hoped for the best.
Even his adorable little sister Bella has had to bear some of the weight on her shoulders. She is always worried about her brother’s well being.
Julian and his family have managed this remarkable challenge like true warriors. They are fighters…all of them. They never stopped searching for his cure. They never gave up hope and they have always been actively involved.
The family has been strong advocates for donor registration. They are at every local recruitment drive. They have made themselves available for every press opportunity, both in English and Spanish. They shared their search, and continue to share the mission through hundreds of social media posts.
They have been the leaders of Julian’s search for a matching donor and we have been proud to be on their team.
Even now, after a blood stem cell match has been found, and a transplant has been scheduled, they continue to raise awareness of the need for more stem cell donors.
We are grateful for their passion.
Continuing Julian’s Journey – And Helping Others
As Julian continues on the road to his transplant, his parents have been documenting his trip to the Cincinnati Children’s Hospital Medical Center. They have been filming some of the tests and evaluations that Julian has been going through. They have included their thoughts and some of the tears.
They are sharing this journey to help others with their experience. We appreciate their efforts to video and share. We hope their documentation will make the experience easier for the next patient.
Below is an overview of the first 6 days. You can follow them more closely through their Facebook page: SaveJulian
Julian’s Surprise Drive-By
Celebrating Julian’s upcoming transplant with a surprise “drive-by” due to COVID-19. Julian has always received tremendous support from his family and friends.
Road-Trip to Cincinnati
A 16-hour drive north, avoiding riots and maintaining curfew along the way. It’s never easy.
As they begin their life-saving road trip, Julian’s parents are anxious. Dad admits his fear and hopes for the best. Everything has been scheduled, but they will not know the outcome until it’s over.
Even during their journey, these Warriors are still supporting the message of adding more donors to the Be The Match registry.
Day 1 – First Day of Evaluations for Stem Cell Transplant
They are up early to get breakfast so they can be at the hospital by 8AM. Today’s schedule includes some bloodwork, COVID testing, Pulmonary Function Tests (PFT), and meeting with doctors.
Unfortunately, the COVID test was the most uncomfortable for Julian.
Day 2 – More Scans and Lab Work
Julian had CT scans, MRI’s, more lab work, and consultations with doctors.
At the end of the day, he just wanted some chocolate cake, but he found out that there is no Publix (a Florida supermarket) in Cincinnati :-).
Day 3 – Fighting Through All of the Poking and Prodding
More MRI, EKG, ophthalmology, and echocardiogram. Julian will be admitted this evening for some procedures tomorrow.
He is happy to receive packages from his friends and read their cards.
Day 4 – A Day of Procedures
In the hospital since last night. A full day for procedures (esophageal dilation, bone marrow aspiration, a biopsy of the mouth, and biopsy of the stomach) and hoping to be discharged tomorrow for some rest before his transplant.
Some of Julian’s procedures and testing will enable research to help future patients.
As you might expect, Julian feels both “happy and nervous.”
Day 5 – Reviewing the Transplant Schedule
Recovering from yesterday’s procedures and a GFR which measures the filtration rate for his kidneys. This video includes an overview of the 10-day schedule where Julian will undergo the necessary chemo treatments leading up to his transplant.
They also find out some positive information about the donor and Mayra thanks them (bring tissues).
Day 6 – Taking it Easy
Only 1 appointment today so they took it easy. Julian won’t be admitted into the hospital again until June 15, and then he will begin chemo treatments of Campath SQ followed by Fludarabine. His transplant, day zero, is scheduled for June 26.
We wish them a successful transplant and a lifetime of happiness. They deserve it!
Please join the registry. Do it for Julian. So many patients are waiting to find their matching cure.
join the registry
Written by: Bret ItskowitchHelp Us Save Juwan
Juwan Adams lives in Abington, PA, just north of Philadelphia. He is a Senior at Abington High School where he is a Drumline Captain, a National Honor Society scholar, and he holds a 4.25 GPA.
In his spare time, Juwan volunteers with pediatric cancer patients.
For the past 4 years, he has also been battling Hodgkin’s Lymphoma. Juwan urgently needs a stem cell transplant to survive.
The only cure for Juwan is to find a matching stem cell donor. His family has been tested and his doctors have been searching the Be The Match registry.
But there is still no match for Juwan…and his time is running out.
The challenge is finding a donor with a similar ethnic background. The chances of a Black blood cancer patient like Juwan finding a match is only 23%. White patients have a 77% chance of finding a matching donor.
There simply aren’t enough African Americans included on the registry.
Not yet anyway.
His friends, his family, and even his high school have been holding marrow drives, asking people to join the registry. He has received support from Penn State and the University of Pennsylvania. Even the Philadelphia Sixers’ Matisse Thybulle has been showing his support and calling on fans to register in case they are a match for Juwan.
But there is still no match.
Could it be you?
Please join the registry on behalf of Juwan. If you aren’t a match for him, you may match another patient. 14,000 patients are searching for their life-saving donor every year. Click the link below and you will be asked to set up an account online. Be The Match will mail you a kit to swab the inside of your cheek. Once you return the kit, you will be included on the registry.
If you match a patent in need, you will receive a call asking you to donate your cells and they will walk you through the process.
80% of transplants use the PBSC method, which is similar to donating plasma. In the time between breakfast and lunch, you may be able to save someone’s life by donating your stem cells.
It doesn’t cost anything and they don’t even use your insurance. Be The Match will take care of everything.
Please join today. Join for Juwan.
join the registry
Help us spread the word. Share Juwan’s story so we can increase the ethnic makeup of the donor registry. You can host a drive or find more information about getting involved here.
Together we can save more lives.
Written by: Bret Itskowitch17-Year-Old Blackbelt, Needs a Fighting Chance to Beat Aplastic Anemia
Anika Mathur is 17 years old and lives in California. Anika, or Ani, is a dedicated student and an accomplished classical dancer who loves to cook.
Ani is also a fighter. She holds a blackbelt in Taekwondo, the Korean martial art that focuses on striking your opponent as a means of self-defense.
Tae Kwon Do translates to “the way of foot and fist”. It is often characterized by an inordinate amount of jumping and spinning…with repeated ‘kicks to the head’.
Given her training as a classical dancer, Anika took well to martial arts.
A Different Kind of Battle
Now, Anika is fighting a much different type of battle.
Last year she was diagnosed with Aplastic Anemia, a life-threatening condition where the body doesn’t produce enough new blood cells.
Aplastic Anemia leaves the patient feeling fatigued and with a higher risk of infection and the potential for uncontrolled bleeding.
Since her diagnosis, and given the repeated visits to the hospital, Anika has been homeschooling. Her parents hope that she can still graduate High School on time, while also maintaining a lower risk of infection.
Anika will need more than “foot and fist” to combat Aplastic Anemia. To survive, she needs a matching stem cell donor from a stranger.
Give Anika a Fighting Chance
There is no matching donor in her family. There is also no match on the national Be The Match marrow registry.
Because Anika is of Indian descent, the odds of a successful transplant are greater if we can find a donor with similar South Asian ancestry.
We need more South Asians to include themselves on the registry.
We have been recruiting within Indian communities across the country. If you are aware of opportunities where we can reach a larger audience, please email us at email@example.com and include “For Anika” in the subject line.
Help us find a matching stem cell donor for Anika to survive.
Include Yourself on the Registry
If you are between the ages of 18-44, you can easily add yourself to the registry. Ask your friends and family to join as well. Click the link below to set up an account and answer a few questions. A kit will be mailed out, asking you to swab the inside of your cheek for HLA typing.
Once you return the kit, your name will be included on the registry to see if you are a match for Anika…or any of the other 14,000 patients who do not yet have a matching cure.
Help us find a cure for Anika. Help us give her a fighting chance.
JOIN FOR ANIKA
Written by Bret ItskowitchLocal Teen Hoping to Find Stem Cell Transplant Match Through Be the Match bone marrow registry – WPVI TV Philadelphia
ABINGTON, Pennsylvania (WPVI) — A local teenager in need of a life-saving stem cell transplant is encouraging more people, especially minorities, to join the bone marrow registry.
Juwan Adams, 17, proudly plays the snare drum for the marching band at Abington Senior High school. He’s also on the national honor roll and a math tutor.
Unfortunately, he’s doing all this while also battling cancer. “It’s a little rough some times. There are some days you just want to be normal but other days realize you just have to keep fighting,” he said.
Join the registry for Juwan
Teen Battling Leukemia Asks for Hispanic Community to Donate Bone Marrow – NBC DFW
Since April, 18-year-old Javier Guereca’s been dreaming of the day he’ll be told he’s matched with a bone marrow donor that can finally put an end to the leukemia he’s battled for a third of his life.
Guereca was first diagnosed at age 11. He’s spent more days in and out of the hospital than he can count, sometimes spending as long as two to three months there at a time.
join the registry for javierA Soldier Receives a Spider Bite in Afghanistan and they Find Leukemia
Miguel Leyva Campos grew up with his family on Catalina Island, just a one-hour ferry ride from Long Beach, CA.
He enlisted in the Army after High School and was eventually deployed to Afghanistan. After a year in Afghanistan, and only one week before returning home, Miguel was bitten by a spider.
Miguel told us that after the bite, he was noticeable tired and nauseous. He had unexplained body pain and he often felt faint. Was this from an Afghan spider bite?
Upon returning to the U.S., he mentioned his symptoms to the doctors during his post-deployment medical check. In 2013, after testing, Miguel was diagnosed with Acute Lymphoblastic leukemia (ALL). It had nothing to do with the spider.
He went through chemo while attending Long Beach City College. Over time, his body went into remission and he began to feel strong again. Tests showed no evidence of disease. He eventually became employed by harbor patrol and his life progressed.
In April of 2019, memories of that spider bite came back to him. Miguel became nauseous and tired again. Blood tests revealed that his cancer had returned.
He is now back on chemo treatments and doctors have recommended a stem cell transplant.
Miguel’s Next Battle
His next battle is not on the fields of some far off land. Miguel is fighting to find a cure, right here on U.S. soil. He is searching for a matching blood stem cell donor.
Despite everyone being tested, there is no match in his family. Of all the cancer patients in need of a stem cell transplant, 70% turn to Be The Match and the National Bone Marrow Registry. They need to find an unrelated donor.
Miguel’s doctors have been checking the Bone Marrow Registry and there is no matching donor for him.
His battle with leukemia will be difficult enough. But because he is Hispanic, this veteran has a lower chance of finding a matching donor. There simply aren’t enough Hispanics and Latinos on the Registry.
Hispanic cancer patients only have a 46% chance of finding a matching donor. White patients have a 77% chance of finding their donor.
We Are Here to Help
The Icla da Silva Foundation is joining Miguel in his battle with Leukemia. We are the largest recruitment center for Be The Match and we focus on adding more diversity to the registry. Our mission is to ensure that all patients have a greater chance of finding their matching donor.
You can help us in this fight. Include yourself on the Registry by clicking the link below. You will set up an account, answer some basic questions and then you will receive a swab kit in the mail.
After returning the kit, you will be included in the Registry. Only 1 out of every 430 people who register, end up matching a patient in need…so we must add as many potential life-savers as we can.
Join us in this latest battle. We need to find a match for Miguel.
join the registry – help miguel
Written by Bret ItskowitchHumbolt Park Boy With Rare Blood Disorder Needs You to ‘Be The Match’ / ABC7Chicago
CHICAGO (WLS) — Alfredo Diaz, a 6-year-old boy from Chicago’s Humboldt Park neighborhood, needs a blood stem cell donor to help cure him from a life-threatening blood disorder.
Read the story here