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Supporting Julian

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Posted: Friday, March 1, 2019 12:00 am

Julian Morales would love to play baseball, go to waterparks, and do most of the things his fellow 7-year-old friends do.

His blood disorder, and his need for a bone marrow donor to successfully treat it however, prevent his dream from becoming his reality.

According to the National Organization of Rare Disorders (NORD), “Dyskeratosis Congenita is a rare genetic form of bone marrow failure, the inability of the marrow to produce sufficient blood cells.”

As a result, Julian and his family have been looking for a bone marrow match over the last four years.

Julian’s mom first noticed something was wrong when he was one, as he appeared jaundiced (more yellow) than other 1-year-olds, and he would have abrasions on his tongue.

In spite of numerous doctors visits ending in hearing everything from geographical tongue, to improper bottle/nipple washing being the cause, these symptoms eventually became 

much worse, said Mayra Garcia, Julian’s mom.

“He was still yellow,” Mayra said, “he would go to sleep sometimes, and he would wake up with blood all over his pillow, and we would have no idea where it was coming from.”

The continued chafing of his tongue, becoming blood-filled blisters which would pop at night, prompted one of his doctors to then

diagnose the problem as cancer: Mayra’s and any parents worst nightmare.

“That day was the worse day ever...I

literally felt like the whole world collapsed on me,” said Mayra.

After numerous bone marrow extractions and steroid doses, doctors were still no closer though to unraveling what was wrong with Julian.

Mayra then began researching online for possible causes. In doing so, one of Julian’s

original pediatricians, Dr. Escovio of Pinecrest,

recommended she take him to Boston Children’s Hospital, in Boston, Massachusetts; a hospital Mayra had herself noticed in her research.

Staying with a cousin in Providence, Rhode Island, Mayra, Julian, her husband and younger daughter made the

hour-plus drive into Boston every day for a week, as doctors and

specialists ran a variety of tests on Julian (now 3 years old) in the hope of being able to diagnose/treat the

problem.

In doing so, Mayra benefited from two huge helps there during that week.

The first hint at what was wrong came in her being able to determine that one of her aunts had two children who passed away from blackfan diamond anemia, another rare blood disorder.

The second help came in having one of the

doctors at Boston Children’s Hospital

actually doing research on Dyskeratosis Congenita, at the same time they were there.

By cross-referencing this information, the medical team was

successfully able to get her son’s disorder properly recognized that week.

Fast-forward to last Wednesday, where the Homestead City Council passed a resolution to encourage residents to get tested to see if they are a match for Julian. There, Vice Mayor Jon Burgess introduced a special

presentation on the need for bone marrow donors, with Mayra and Alison Dos Santos, a representative for the Icla Da Silva Foundation: an organization that works to help others, like Julian, find donors for bone marrow transplants.

At the presentation, Dos Santos highlighted the increasing need for bone marrow donors.

“Many patients throughout the country and in our own community of Homestead are also waiting,” said Dos Santos. “They face a huge challenge, and that is the lack of diversity in the national bone marrow donor program.”

Based upon current figures and estimates, there are only enough donors for 46 percent of Hispanics, 41 percent of Asians and 23 percent of African-Americans -- for people of mixed racial backgrounds, the number drops to 15 percent.

As such, Don Santos further explained the urgency for minority blood donors.

“Ethnically diverse patients with blood disorders have a lower chance of finding a match. Our mission is to raise awareness of what it means to become a blood marrow donor,” Dos Santos said. “We are inviting community members to ‘be the match’ for Julian and thousands of others who are waiting to find their match. We’re trying to raise awareness of what it means to save someone’s life.”

Mayra reiterated just how impactful the council’s resolution was.

“I’m just here as a mother who’s desperate for help, we’ve been trying for four years, said Mayra; “it’s not just my family that this will be helping, it’s multiple families.”

Spotlighting the

popular misconceptions and fear surrounding marrow donations, Mayra also discussed the actual reality of registering as a donor; which only involves a swab test.

“People get scared when it comes to the bone marrow registry and it’s so simple,” Mayra said.

For Julian, Mayra said, his dream is to find his match and live, not just survive, along with others who are waiting for their matches.

“He literally prays about it every day, because he wants to stop going to doctors, stopped getting ‘pinched’, and do all the things his friends do...and be able to help whoever needs a match too,” said Mayra.

For those interested in helping him, please text JULIAN to 614.74 to receive a link to an online registration form.

For further information on becoming a bone marrow donor, and/or other simple ways you can help, please contact Alison Dos Santos at lison@icla.org. All donors will need to be between the ages of 18-44, and without previous conditions such as cancer, HIV, AIDS and Hepatitis B and C.

Please also go to the website ‘bethematch.org’ for even more donor information, as this site contains and manages the largest and most diverse marrow registry in the world.

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