Ronnie is 16 years old. Ronnie developmental delays were diagnosed at a very early age. He didn’t attempt to hold his head up at 2-3 months of age, didn’t roll over or babble any words.
After seeing numerous specialist from neurologist, genetics and psychiatrist. Every test imaginable was completed: MRI’s, CT’s, EEG’s, lab work and so on. The doctors were never quite clear what to diagnosis him with so they labelled him as having moderate mental retardation , now known as Intellectual disability. They were determined that he would never walk, talk or be independent at all. Ronnie did start to show some slow progress. He first sat up at 9 months of age and crawled (army crawled) at age 1.
Until, his nightmare of his development turned for the worse “Cancer”. In a regular routine eye exam at the age of 20 months, 8 tumors were found in the retinas. He was diagnosed with Retinoblastoma, rare type of eye cancer that usually develops in early childhood, typically before the age of 5. Retinoblastomas are caused by deletions in the region of chromosome 13 that contains the RB1 gene.
We then were given three choices:
1. Leave the tumours, most likely spread and he will lose his life.
2. Remove the eyes.
3. Chemotherapy and here are all the horrific side effects.
Our only choice to try and save his life and vision was Chemotherapy. The next 2 years he lived with 2 different types of chemotherapy, laser and cryotherapy treatment. In addition, he was hospitalized numerously with pneumonia and other infections.
After 4 months into treatments Ronnie began to have Grand mal and absence seizures. He was now not only being treating for his cancer but placed on AED’s (anti-epileptic drugs) to attempt to control his seizures.
His poor body was just so tired of all the poison he had to endure from the chemo to the aed’s.
Our son is a fighter no doubt. The doctors were amazed he began to walk and have some language at the age of 3. Till this day, almost 15 years later, he struggles with the Intellectual disability, Autism, Intractable Epilepsy, and Hypotonia. Ronnie cognitively functions as a 5 year old. Unfortunately, with these conditions comes along OCD, behavioral, difficulty forming relationships with peers his age, has extreme distress over minor changes in routine, and has an overly narrow area of focus when playing or
a very restricted range of interests.
Our hope and dream of using the CBD is to give Ronnie a life of pharma drug free, Epilepsy, better cognition, alertness, and help him with the behaviors. In which, many parents are finding to be true with the use of the CBD. Even with these many struggles Ronnie endures daily, as Nichole Montanez (Photographer) put it he has the “sweetest soul this side of the Mississippi.
There is never a day that goes by that he doesn’t have a smile that lights up a room. He also never forgets to tell us “ love you momma” or “ love you daddy”. Oh how he melts our hearts.