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Heartache and Hope – 3 Transplants in 3 Months

Julian Continues His Journey: The Search for a Life-Saving Donor

Julian Morales is a 9-year-old warrior.

He has suffered from a rare genetic disorder called Dyskeratosis Congenita (DKC) since the age of 3.

His bone marrow doesn’t work properly. Julian’s body doesn’t produce enough stem cells and as a result, his immune system is severely compromised. It also causes painful, sometimes bleeding ulcers in his mouth, which obviously affect his ability to eat…and speak.

Finding a Cure

The only cure to Julian’s life-threatening disease is a blood stem cell transplant.

In order to make that happen, his family needs to find a donor. A healthy, matching donor.

Doctors search the Be the Match registry to find donors. It’s a national registration of volunteers, each of whom has signed up to save a life by donating stem cells if they match a patient in need.

The best chance for a successful transplant is to find a donor who matches the ethnic background of the patient. There are over 20 million potential donors included on the registry.

But there are challenges when searching a donor match for each specific patient, especially if those patients are ethnically diverse.

Challenge #1

Because Julian is a mix of Mexican and Nicaraguan descent, the chance of finding a matching donor was very limited. Only 7% of potential donors on the registry identify as Hispanic or Latino. There simply aren’t enough people of Hispanic origin included on the registry.

Finding someone who is Mexican and Nicaraguan is even less likely.

His parents became aware of this challenge very quickly.

A Simple Assumption

When you visit the doctor or go to the hospital with a disease, you assume they will be able to help you. There are expectations that a medicine will be prescribed or surgery will be performed in order to make you better. You assume they will be able to cure you.

You never expect that the life or death of your child will rely on searching for and finding a volunteer donor. You never consider that you must find someone who matches your ethnicity and is willing to donate their stem cells, so your son may survive.

The Goal

There was no match for Julian on the registry.

So his parents worked with us day and night to search for a matching donor. We held recruitment drives together at universities, churches, and street fairs. His parents spoke with newspapers and television stations. They met with anyone who would listen in order to spread the word.

New Facebook and Instagram pages were started. YouTube channels were produced. All to increase awareness and add more potential donors to the registry. They had to tell his story…over and over again.

We were searching for his cure.

Challenge #2

The second challenge is not just finding a donor who matches but finding one who will say ‘yes’ when called to donate.

In 4 years, the Icla da Silva Foundation worked with Julian’s parents to hold hundreds of recruitment drives. We added thousands of new donors to the registry on behalf of Julian.

In the 4th year, two matching donors were finally identified.

 

Unfortunately, they both said no when asked to transplant their cells. One after the other. They each said no.

Can you imagine the heartache? To work so hard, to come so close to saving the life of your little boy, only to be turned down?

So we continued the search, hoping to find that one match who would agree to a transplant.

Commitment

Becoming a stem cell donor does require a commitment, but it is not unsafe or painful. 79% of donations are done through a non-surgical process called PBSC. The process is similar to giving plasma. The donor receives a shot of a drug called filgrastim every day for 5 days. This increases marrow production in the body. On the day of your donation, you visit a hospital or clinic for the PBSC procedure. They take blood from your arm, separate the stem cells, and return the blood to your body through the other arm. It usually takes about 4 hours.

In the amount of time between breakfast and lunch, while sitting in a clinic and watching TV, or talking on the phone and having a snack, you may save the life of another person.

become a life-saver

A Match Was Found

Finally, a matching donor was found, followed by much joy and relief. Julian and his family were grateful and happy to travel to Cincinnati Children’s Hospital to prepare for the transplant.

His little body had already been through so much, but it was only just the beginning.

 

So much testing, prepping, prodding, and chemo in the days leading up to his transplant. This was in July, so the testing included repeated COVID testing. Then finally infusion, and waiting for the cells to engraft…all during a global pandemic, while protests and social unrest happened throughout the country.

His parents published a video diary of those first few days which is highlighted here.

But the transplant wasn’t successful. Julian’s body fought the new cells.

2nd Transplant

The doctors recommended a haploidentical (haplo) transplant. A haplo is a half-matched stem cell transplant from a family member. A biological parent or child is always a half match to the other, based on genetics.

Since haplo matches aren’t 100% compatible, it comes with more risk.

They tested and chose Daddy as the best candidate.

Unfortunately, once again, Julian’s immune system fought off his daddy’s new cells.

3rd Transplant

Refusing to give up, the small warrior and his parents agreed to try another transplant.  More testing, more chemo, a third month in the hospital…and a third transplant, this time from Mommy.

For the third time in a row, the transplant didn’t work. Julian’s body fought off the cells.

Now What?

We begin again. Three transplants in three months and we will start the process all over again. We will continue to fight to save Julian’s life! We will continue the search for a compatible life-saving donor.

Small Goals

The warrior is waiting. His warrior parents are waiting. Waiting and worried, but they carry on. They’ve been fighting this battle for more than 6 years. Until then, the family takes it one day at a time.

Julian’s most recent goal was to eliminate some of the many lines that attach his body to machines. Most recently, his TPN line (the feeding line that bypasses the gastrointestinal tract) and his PCA line (the line that helps him control his pain) were removed.

His goal is to prepare for Halloween. He wants to be able to wear a costume.

But he won’t tell anyone what he will be…it’s a surprise…and we can’t wait to see him smiling in it!

We wish you a happy Halloween Julian. We’re here for you. Keep smiling.

Become a potential blood stem cell donor. Include yourself on the national registry. Do it for Julian.

are you ready to save a life?

written by: Bret Itskowitch

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Julian Found His Matching Donor → Julian’s Transplant Journey

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.

True Warriors

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 Itskowitch

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Help 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 Cure

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

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.

The Search

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 SixersMatisse 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.

Donating

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 Itskowitch

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17-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 info@icla.org 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 Itskowitch

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Local 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

save juwan

Read more…

 

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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.

Read more…

join the registry for javier

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A 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.

Not yet.

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 Itskowitch

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Humbolt 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

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