One-year-old boy, PHL's first survivor of rare blood disorder, now in need of bone marrow transplant

Born premature at 29 weeks, Alexander Benedict Caringal has fought for his life since he came into the world.

Alab, as he is known to his family, was born with an enlarged heart and fluid in his abdomen.

The condition was diagnosed as hydrops fetalis, which causes fluid to accumulate in different parts of the body.

Alab was delivered early via emergency caesarean section and treated at a neonatal intensive care for three months to save his life.

Over time, Alab's heart slowly decreased in size and fluid receded from his body, but the aggressive retinopathy that developed during his treatment almost rendered the infant blind.

Upon further testing, his parents Jose and Russellee Caringal found out that 4-gene deletion alpha thalassemia caused Alab's hydrops fetalis.

According to the U.S. National Library of Medicine, alpha thalassemiais is a blood disorder that reduces the production of hemoglobin or the protein in red blood cells that carries oxygen to cells in the body.

Because infants who contract the disease are either stillborn or die after birth, Alab's doctors were shocked when the boy survived his first year of life.

"His doctors were in disbelief because the genetic tests were incongruent with his clinical picture. He was definitely one for the books," Mr. Caringal said of his son in an email to GMA News Online.

Alab is apparently the first and only reported survivor of alpha thalassemiais in the Philippines.

However, the young boy now requires blood transfusion every three weeks for the rest of his life to allow his body to function normally- but this life-saving procedure may eventually cost him his life.

"Iron from the blood being transfused deposit in his vital organs, such as his heart and liver, which ultimately cause them harden and be dysfunctional," his parents said.

"His spleen will also enlarge, which will later on require surgical removal. It is a race against time before all these complications occur," they added.

To save his life, Alab's parents are asking for help to allow their child to undergo a bone marrow transplant, which would cost "millions of pesos."

"[We] cannot do this alone as they have only recently begun their own private practice as physicians. The little savings that [we] had was already spent during Alab's stay at the neonatal ICU for 3&1/2 months," they explained.

For now, the Caringals are asking supporters to share Alab's story and his AVP on Youtube to "raise awareness for this deadly condition".

"As parent-doctors, [we] only wish to give [our] son the best fighting chance there is for him to live a normal, happy life, and rid him of having to go to the hospital for blood transfusions every 3 weeks for the rest of his life," they said.

"[We] believe that he has a God-given mission that he was chosen to push medicine to its limits to help children afflicted with this deadly condition. To [us], the more important aspect of this cause is to be able raise awareness for this deadly condition by sharing Alab’s story to the world," they added. —JST, GMA News