Saving Edge: Family races against time to save baby with rare condition


Posted at Jan 30 2019 01:53 AM | Updated as of Jan 30 2019 06:56 AM

MANILA—The parents of a 6-month-old boy are seeking help for their child who is battling a rare disease.

Edge Arwen Baloaloa was born on July 8, 2018. His mother, Arabelle, had a delicate pregnancy and Edge was born prematurely at 34 weeks.

He is a cheerful baby but on January 2, days before he turned 6 months, Edge had a fever which has lasted for weeks.

His family rushed him to hospital. He was initially diagnosed with a viral illness, and was advised to take antibiotics. Arabelle and her husband, Erwin, however, had reservations since Edge's young liver could be adversely affected by the antibiotics.

Edge was taken to another hospital, where he was admitted because of urinary tract infection (UTI) and bacterial pneumonia. He was given medicine, but his fever did not go away.

Soon after, Edge showed different symptoms such as a big abdomen and loose stool with mucus.

It was later found out that the baby's kidney, liver and spleen were enlarged. Several tests were conducted before he was diagnosed with Acute Myeloid Leukemia (AML).

According to Erwin, they initially wanted to be admitted to St. Jude Children's Research Hospital in Tennessee.

"Being accepted at St. Jude Children's Hospital in Tennessee was our initial plan. They have a charity treatment program there. Unfortunately, we were not accepted," he told ABS-CBN News, adding the hospital was unable to admit Edge due to the volume of cases it currently has.

It was only on Tuesday, January 29, when doctors told Erwin that Edge has developed Hemophagocytic lymphohistiocytosis (HLH), an "aggressive and life-threatening syndrome of excessive immune activation."

"It is an overreaction of his immune system that eats up his healthy cells and eventually causes his organs to fail. This requires an immediate and aggressive treatment as it develops too quickly and causes deterioration almost instantly," Erwin wrote on a Facebook page created for Baby Edge.

Erwin also said the first thing he needs to do is to treat HLH, "which is the more agressive and fatal condition if not treated."

"They will then manage his AML with chemotherapy drugs, while treatment of HLH is managed," he added.

As of this writing, Baby Edge is undergoing several procedures. Erwin said his baby's treatment may take three years, depending on how Edge responds.

Since both AML and HLH are aggressive illnesses, the family is racing against time as Edge needs immediate intervention.

"Pareho pong aggressive 'yung HLH ang AML. That's why kailangan po ng immediate intervention. And sobrang expensive po ng treatment kaya po we were raising funds for Edge," Erwin said.

(Both HLH and AML are aggresive [conditions]. That's why we need immediate intervention. The treatment is very expensive so we are raising funds for Edge.)

The family needs roughly P2 million or $40,000 for Edge's treatment, which will cover his hospital expenses, chemotherapy and stem cell transplant.

"God's wisdom is greater than ours. Although the current statistics show that the prognosis is small, we have a bigger God who makes all things possible. This is why we also ask for your prayers as this will help Edge and us in this long journey that we're going to take. God Bless your hearts. We thank you all in advance," Erwin wrote on Facebook.

Interested individuals can check out Edge's Facebook page for more details.

Edge also has a GoFundMe page.