After 3 miscarriages and 12 years of marriage, my husband Richard and I became pregnant with Olivia. At three months gestation, the OBGYN spotted a potential concern with her brain development and recommended a more specialized ultrasound test. Olivia was diagnosed with Hydrocephalus in Utero and was scheduled to have brain surgery the day after birth when a shunt was going to be inserted to relieve the pressure from her brain. Olivia was born via C-Section without any complications and despite what the doctors were telling us, we held her in our arms and to us, she looked like a perfectly healthy baby girl.
She was so beautiful! A brain MRI was done and the next morning the neurosurgeon told us, much to our horror that Olivia had a severely underdeveloped brain, she was diagnosed with Normal Pressure Hydrocephalus and was not a candidate for a shunt. In essence, Olivia’s brain was mostly fluid with a small amount of cerebral cortex, supposedly not enough to sustain life.
All of a sudden we were faced with a baby girl with such severe brain damage that she was not expected to survive or she would likely have such serious challenges that the hospital ethics board presented us with the option to let our daughter pass by "withholding nourishment" which of course we heard as the unthinkable, starving our daughter to death.
For five weeks we were in NICU trying to get Olivia to take nourishment and entice her out of the darkness of her sleep so she wouldn't stop breathing. At the same time, numerous tests results were coming back revealing that she was deaf, blind and that the damage in the brain was very severe in areas of cognition and motor skills, it was expected that she would not be unable to move, talk or have any awareness of self or the word around, she would have devastating seizures and more than likely die of aspiration.
We had to contemplate a parent's worse nightmare, and obviously, we were having difficulty in trying to decide the impossible. It was then, we believe, divine intervention happened when through a series of “coincidences”, we were able to hear opinions from very famous doctors and specialists. The consensus was that although it was certain that many challenges would lie ahead, Olivia had a chance. Armed with that we took our little angel home with a feeding tube, a broken heart and the fear of the unknown understanding anything could happen to our daughter at any moment.
One of the first goals to achieve was not to use the stomach tube as we felt that it was important for Olivia to develop her urge to live. After a week of trying to get her to have the motivation to take little sips from a tiny bottle, the most remarkable miracle occurred when my husband suggested to attempt breastfeeding Olivia. We tried and much to our astonishment she took right to it with gusto! She expressed her approval verbally as she was nursing, for the first time our daughter expressed emotion.
At that point, although completely ignorant of the difficulties and stress we would face as parents of a severely disabled child, Olivia showed us that she was not only a survivor but a fighter. At 13 months old, we had the first indication that Olivia could have a mitochondrial metabolic disease; the level of Lactic Acid in her blood was very elevated. Olivia underwent a muscle biopsy, genetic testing and a number of studies over a period of 4 years before she was diagnosed with Pyruvic dehydrogenase Deficiency, a genetic neurodegenerative disease that prevents the cell from fully metabolize glucose affecting energy production and increasing the built up of toxic lactic acid in the blood and brain. This diagnosis caused Olivia’s brain damage.
During the time that we were waiting for a final diagnosis, our days were spent dealing with Olivia's significant day to day challenges, doctors appointments, studies and multiple therapies. Under the assumption that she would have seizures, she was prescribed Tegretol, we became concerned because Olivia was mostly sleeping during the 6 month period while she was taking it but Neurologists assured us that she would have devastating seizures if not medicated. Another in a series of small miracles put us in touch with a Neurologist that decided to take Olivia off the med and see what would happen. Olivia “woke up” and to date, she has not had a clinical seizure although she has an abnormal and epileptic brain.
We were blessed to see that our prayers were answered in that she was aware of herself and her family. Her hearing loss was profound but she was not deaf, her vision loss was related to brain damage so it was hard to tell how much she was able to understand but through constant stimulation, we could see small improvements. Motor skills were indeed severely affected but we were diligent and hopeful to be able to see improvements in this area as well. Olivia was eating pureed foods by mouth, a very time-consuming task that was getting increasingly difficult as her body was accumulating lactic acid and becoming more spastic. She was not getting the appropriate nutrition so eventually had to go back to a stomach tube which was removed at three months while she was effectively nursing.
After confirmation of Olivia’s diagnosis, we started the Ketogenic diet formula to bypass the metabolic defect. The levels of lactic acid in the blood decreased to normal levels immediately, this greatly improved her quality of life as it allowed her to realize and focus more energy into her body. Unfortunately, after 5 years of lactic acidosis, Olivia’s health was negatively affected and blood panels showed great deficits at many levels. We started a process of detoxification using natural remedies and protocols with the guidance of a wonderful Naturopath doctor that was instrumental in Olivia’s healing journey…another small miracle.
At the same time, Olivia was diagnosed with scoliosis, we had not noticed because of her excess weight but she had developed a severe curvature and we needed to consider surgical intervention. We consulted with several orthopedic surgeons that did not feel that she would survive surgery because of her metabolic disease. Her curvature continued to worsen and pray for a door to open since we knew no intervention was a life sentence. After two years, Olivia’s health was optimal due to the success of the natural protocols that built up her immune system and prepared her for the surgery we were hoping she would have
It was then when God opened the door and we heard of a pilot program for early onset scoliosis at Rady’s Children’s Hospital in San Diego. We had a consultation and two months later, Olivia had an 8-hour surgery where a “growing spine” was placed without any complications and with amazing results. As part of the treatment, several surgeries were performed over a period of 5 years to lengthen her spine hardware and she never experienced any complications of infections. She had her final 7-hour spine fusion on 2013 after a total of 10 spine related surgeries. Although her curvature still moderate, her life was spared once more, her lungs have normal function and she has never had any upper respiratory issues, her resilience and healing potential has amazed her doctors who consider her a success story.
As we were done with the orthopedic surgeries we started to wonder about Olivia’s brain functioning and her epilepsy, we had not seen any seizures but sleep patterns were poor. We always assumed that spine pain or gastric discomfort were responsible for this issue. We decided to consult a Neurologist and have a follow-up EEG since we had not repeated it since Olivia was 2 years old. The results showed no REM sleep cycle and luckily, still no clinical seizures. Lamictal was prescribed but after reading about all the potential side effects, we decided against it.
We heard about CBD and its healing potential through a friend that was having very hopeful results with her daughter and decided to try it instead of Lamictal. We started a popular CBD oil, ”One of the Hopes” on November 28, 2014. Olivia’s sleep patterns were greatly improved and she began sleeping 7 to 8 hours without waking up. We were very encouraged but because Olivia does not have clinical seizures to note it was difficult to see benefits in other areas. We then switched in February 2015 and tried a popular CBD oil from Colorado with no change. I was starting to question about other CBD options that could be better… we heard about Elysium’s CBD from other people in our group and switched Olivia to it in June of 2015, just a little over 6 months ago.
I can say without a doubt, that Olivia has made real and verifiable improvements with it. Her vision has improved to the point that in her last vision exam, her right eye does not need correction anymore and the left eye’s correction has decreased. In addition, her vision as it relates to function has also improved, she is coordinating her eye movements much faster and accurately.
According to the last EEG, she is now having REM sleep. The most remarkable improvements are in the areas of cognition and communication. She has made quantifiable progress in her school curriculum, meeting her goals at a much faster rate than ever before. She is recruiting her memory and building on previous knowledge much more effectively. Her teacher and therapists are noting the changes in her ability to understand and communicate her understanding very clearly, were before was questionable.
Last week, she successfully interacted with an eye gaze device as part of a trial to get funding for one of her own. She had her first trial last May and she was not able to get very far but now she has better control of her eyes and was able to purposefully make selections. The speech therapist and rep were really amazed, Olivia was so proud of herself!
She is also realizing improvements in her Physical therapy goals. She is better at following verbal directions when asked to move a body part. This has been extremely difficult for her in the past. Now more than ever before, she seems to be connecting the dots and making progress on all her disabilities. Finally, her brain has the nourishment needed to support healing.
We believe that in a way, her real healing has just begun. We are so excited about her future gains and continued success with Elysium CBD. Olivia has had a life full of serious hardships but now she has a real chance to overcome. She is starting to live up to the potential we always hoped and prayed for. She is thriving socially and she is able to express her sweet and happy personality. We feel her joy and appreciation of being alive every day.
The love Olivia radiates to all that know or meet her is her greatest gift. Only God knows what is in the future for Olivia, but we are very thankful for each and every day we get to share with her in her journey through life.
Olivia's proud parents,
Rich and Lorena