Support EJ's Journey with CHARGE Syndrome

The TNT Family is so excited to announce the birth of Ro & Fabi’s son, EJ! EJ was born on Monday, March 31st at 10:57am, weighing 5.2lbs and 17.5 inches long! Ro & Fabi are over the moon to be new parents and mama is recovering well!

During pregnancy, doctor’s discovered that baby EJ was going to face some challenges after birth, there were so many questions they had but few answers could be provided. Shortly after EJ’s birth he was diagnosed with CHARGE Syndrome and Cleft lip.

CHARGE Syndrome is a rare genetic condition that affects about 1 in 10,000 live births. Anyone can be affected by CHARGE syndrome has it is a result of a mutation of the CHD7 gene.

CHARGE is an acronym that describe the most common symptoms presented in newborns (not all newborns will have all symptoms; every case is unique):

C – Coloboma and Cranial Nerve Abnormalities (missing tissue in eye/paralysis of one side of the face)

H – Heart Defects (present at birth)

A – Atresia of the Choanae (narrow or blocked nasal passage)

R – Restriction of Growth and Development (needs more time to meet height/weight and developmental milestone for age)

G – Genital Abnormalities (varies for each child)

E – Ear Abnormalities (ears that stick out or lack lobes, could lead to deafness)

There are still so many unknowns with this diagnosis, but what we do know is EJ will need heart surgery within the next few weeks. He will then face another surgery when he is around 6 to 8 months old. As EJ continues to grow, he will be closely monitored and could undergo more surgeries down the road depending on his development. He will also have surgery to repair his cleft lip as soon as doctors feel he is strong enough to do so.

Currently, EJ is in the NICU and under close monitoring around the clock. Ro and Fabi get to visit with him and have been able to change him and give him a bath! While we know they are doing everything they can to be there for their son, this unexpected diagnosis is going to lead to medical bills they did not foresee coming. According to The Charge Syndrome Foundation, a typical child diagnosed with CHARGE will see about 17 different medical specialist and have more than a dozen surgical procedures, all before they are 10 years old.

We share their story to invite you to donate if you are willing and able. We kindly ask that you pray for their little family and the unique journey they walk as EJ continues to grow and develop one day at a time!

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a future.” Jeremiah 29:11