Benaiah Ramos

Benaiah’s Story

Benaiah Daniel Ramos
Born 9/16/2018

Our Sweet little boy spent his 3rd birthday very differently than was originally planned.

This unexpected journey started the last weekend in August, a mere 3 months ago…

It all started with Benaiah getting sick, it was originally thought to be gastro related but when it seemed to take a turn to something more serious we headed to St. Louis Children’s Hospital. Once there it was test after test to determine what the root cause was.

We have an amazing team of doctors. At that time they were determined to stay the course until they figured things out. During this waiting game we faced some very dark days. Since that time we have faced many more.

Our source of strength has always been in our deep Christian Faith. We put the word out for prayer, not just for our little boy and his needs but also for peace during the storm. We placed Benaiah into God’s hand before he was even born and have continued to do so each day.

For some this might have shaken their faith but for us it only strengthened, deepened ours. OUR GOD IS IN CONTROL. This means we get to rest, trust in His plan for Benaiah’s life.

This journey, Benaiah’s unexpected journey, has taken many twists and turns but we have never wavered in our resolve and belief that God has a very specific plan for his life.

Where are we today in the process? On Sep 2 he was diagnosed with Acute Megakaryoblastic Leukemia, AMKL with two rare genetic malformations. Benaiah has gone through 3 rounds of chemotherapy, we are preparing for the 4th round which includes a bone marrow transplant. On Dec. 1 he had a permanent shunt placed.

As we are walking through this we have had to make many adjustments to our life, one of which is moving our 12 year old daughter Elizabeth-Joy (EJ) in with Jenna’s parents in Northern Illinois. We cannot express how difficult it is to be away from her. We are a VERY close family and the pain we feel is real.

She is thriving and living the life of a 12 year old. She is working to keep her grades up (homeschooled), making new friends and staying in touch with old friends. We believe the God of comfort and peace is helping her daily.

One of our highlights is when Jenna’s mom brings EJ down for a visit. She has become very well versed in the hospital routine and brings a bright spot with her visits. Benaiah LOVES his Sissy.

As we continue this journey we stand on the scripture:

Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10, ESV