Boy With Genetic Disorder in Desperate Need of Transplant

Julian Morales, a 6-year-old boy with a rare genetic disorder, loves to play with his little sister. As time drags on and Julian’s time becomes ever more limited, his family is desperately searching for a bone marrow donor.

Julian was born on Sept. 18, 2011. When he was first brought home, his parents believed their son was a healthy baby boy. A year into Julian’s life all seemed well, but his health started to fail shortly after his first birthday.

“It’s hard for us to see our son going through something where we can’t help him,” Dany Morales, Julian’s dad, said. “We went back and forth for about a year trying to try and get diagnosed.”

Julian was diagnosed with dyskeratosis congenita, which is also known as Zinsser-Engman-Cole syndrome. In Julian’s case, the genetic disorder is causing his body to have trouble making blood cells.

The only solution is a bone marrow transplant.

Dr. Suneet Agarwal, who works at the Boston Children’s Hospital, said Julian’s condition “is thought to be a rare disease – one in a million. “

“It’s hard to manage patients who have failure of the blood system without a bone marrow transplantation,” Agarwal said. “There are things you can do – like blood transfusions and medications. It is a serious situation.”

To save Julian’s life, the parents have intensified efforts to raise awareness and find a donor. The organization “Be The Match” helps pair people in need of a bone marrow transplant with someone who can help.

For those seeking to help, cotton swabs used in the process collect cells from inside a person’s mouth. Those cells are then tested to determine if a match is found. Potential donors must register with the organization and should follow through the process.

Experts say that although testing is simple, finding a match is difficult.

“For Julian, we have been looking for a match for over a year – 16 million people and no match for Julian,” Malena Laughlin, a representative for The Icla da Silva Foundation, said.

To help Julian and his family, please register and proceed with the process to see if you can be a donor at Be The Match.

Julian’s cause has also generated a GoFundMe page to help the family pay for medical expenses.

For more information, please visit Julian’s Facebook page.

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